Diagnosing Celiac

[Greta]

The primal/paleo thread reminded me of something that I have thought about asking here before.

 

My body has such a strong reaction to gluten that I thought maybe I had Celiac disease, and asked my doctor about it. He ran a blood test, and initially I got a letter from him saying that the test was positive and that I have Celiac. Just a letter. So I set up an appointment to talk to him about it, and in the meantime, asked his nurse if she could tell me the specific name of the test and what my numbers actually were. She looked it up, said my test results were normal, and that she'd have the doctor called me back. The doc said he'd made a mistake in reading the lab report, and I was fine.

 

In telling a couple of people about this, I've been told that the blood tests are not accurate anyway, and that I probably have Celiac given the way my body responds to gluten.

 

For those who are more familiar with the disease, I was wondering if you could tell me if there is any reason that I should pursue a diagnosis. Other than the very small amount of bread in communion on Sundays, I absolutely avoid gluten because I *know* it makes me sick, even if I don't know how/why. So is there any reason to need to know definitively if it is Celiac or not? And if so, what IS the best way to diagnose it?

[jplain]

If it really is celiac, would you still consume gluten for communion? I personally wouldn't, and I'd be happy to elaborate my reasons if you'd like. :)

 

Regarding the best way to diagnose...well, it can be difficult. First, I'd want to know exactly which tests were ordered, and the results of each test.

Honestly, from what you've written, I wouldn't have much confidence in your doctor's ability to diagnose celiac.

Edited December 1, 2010 by jplain

[Mama Geek]

My husband is not officially diagnosed and unless he has to have his stomach scoped for something else he probably never will be. Also I think you have to have eaten some gluten recently for that to be accurate as well.

 

As for communion wafers my dh can't do the wheat wafers. There are places that a church can order rice wafers from. He has never had a problem with them.

[Greta]

If it really is celiac, would you still consume gluten for communion? I personally wouldn't, and I'd be happy to elaborate my reasons if you'd like. :)

 

I lean towards yes, but I would talk to my priest about it, and I would welcome your elaboration. I know there is another family in my parish with a child with Celiac. I should ask them what they do.

 

Regarding the best way to diagnose...well, it can be difficult. First, I'd want to know exactly which tests were ordered, and the results of each test.

Honestly, from what you've written, I wouldn't have much confidence in your doctor's ability to diagnose celiac.

 

I am going to call my doctor's office and find out. He is normally a great doc, but this whole thing was kind of weird! And I don't know how much a family practitioner usually knows about Celiac.

[Soror]

My thoughts, the blood tests are not that accurate. They are especially not accurate if you are off gluten when doing the test- throwing that out there. Regardless of rather or not someone has Celiac's you can still have gluten intolerance. The average person takes YEARS if not decades to get a Celiac diagnosis, most dr's are ignorant about it and who even knows what test they did.

 

Some people really like to pursue testing because they need that incentive to keep the diet. There are also some tax write-offs for gluten-free food- over and beyond the cost of non-gluten free food(I wouldn't see the need as I don't do gf subs).

 

Regardless, I think it matters little. A gluten free diet is a healthy one. One doesn't need gluten to be healthy, there are no nutrients contained in gluten foods that are not contained elsewhere.

 

I don't do communion anymore. I do wine, but no bread. In the Catholic Church we have the ability to have communion wafers that are made that are considered gluten -free, some Sisters in MO make them. For me I just do the wine, I talked to my Priest about this and it was already the practice of the other Celiac there.

eta

For me I don't have an official diagnosis. I couldn't afford it to be honest(we are on high-ded insurance). By the time I got to that point anyway I didn't care. I couldn't put myself through going back on gluten anyway. Consdering my medical history(my med history is practically poster child status for Celiac's) and my son's genetics I think it is a waste of money.

Edited December 1, 2010 by soror

[speedmom4]

The GI doctor did a colonoscopy and took a biopsy of my son's colon. Also, while in there they looked around for any type of irritation of the colon. The colon looked normal and the biopsy was negative. They didn't do any blood work to determine. He was having a lot of other GI issues and he did get a diagnosis but not for Celiac.

 

Hope you get some answers,

 

Elise in NC

[Supertechmom]

IME, the test is useless. The gold standard and the only acceptable definitive dx that all drs seem to agree upon is a small intestinal biopsy. Which of course only covers the first section of intestine and not the whole thing. It also only consists of removing teeny tiny sections. perhaps 6- 20 small sections. This is problematic because Celaic is known to be a "patchy" disease, is not uniform or consistent in the intestine, and occurs in stages - 4 being the worst 1 the least or no damage. Basically the dr is making a best judgment call and getting a decent sampling to test under the microscope in the lab.

 

this process has a myriad of faults.

1- The pieces could be from damaged sections or not

2- One can't tell by eyeballing

3- The biopsy must get a large and diverse sample. A lot will only take 6 and call it good.

4- the lab must orientate the samples correctly and know what to look for.

5 the gi dr must agree to dx. Apparently they have a lot of leeway in being able to dx the final decision. I've heard horror stories of kids being dx in childhood only as adults have a dr insist on redoing the test on a gluten free diet and then when the results are negative (which they should be at that point) insisting they don' have Celiac. Others won't dx at stage 3 only at stage 4. Others will call stage 2 preCeliac and demand another year of ingesting gluten and a retest to see if more damage has occurred.

 

 

the best method and the one that all of our drs pretty much poo-pooed was a year long gluten free diet and then a challenge. 3 of us failed the challenge miserably and horribly. Only the ped would dx the kids with Celiac. The rest said not conclusive enough.

 

I have found no reason to have a positive test result. I tell the drs I have Celiac. I demand that all meds be gluten free or substitutes found. I do the same for the kids. NO ONE has ever once questioned or asked for results to prove it. Perhaps if they were in school, there might be a reason. I found reasons not to have a dx. insurance refused the kids their own private policy and the work policy raised the rates.

 

Check the letter. It should be the lab results. If not, call back and get them. If you have any antibodies, you are having a reaction to gluten. My question that has never been answered is at what point do those antibodies become a problem for me? When they are at 2, 5, 100? Everybody's body is different and some may have sky high results with no symptoms and others may have a measly 2 and lay on the floor ready to die from gluten.

 

we found all the testing,probing,and poking was a waste and just made things muddier. I should have saved the money and bought some gluten free cookies.

[Greta]

Also I think you have to have eaten some gluten recently for that to be accurate as well.

 

I deliberately ate some gluten about 12 hours before the test. Would that be enough to trigger the response that would be measured in the blood tests?

 

As for communion wafers my dh can't do the wheat wafers. There are places that a church can order rice wafers from. He has never had a problem with them.

 

Oh, I'm glad your dh has this option! My church (Orthodox) doesn't use wafers, but uses bread baked by someone in the parish. Still, I could ask my priest about this if it does turn out to be Celiac. Thanks for mentioning it!

[Greta]

Servin, thanks for this information! Can you tell me more about what the "challenge" is and how it is evaluated?

[Harriet Vane]

It is unbelievably difficult to get a celiac diagnosis. Scoping the intestine is considered the gold standard, but even that test is seriously flawed, for two reasons:

 

--It is possible to scope a section of the intestine that is not damaged, and thus get a false result. The scope is truly only effective when the tech is lucky enough to get a damaged section, OR the intestine is so badly damaged that it's easy to get damaged tissue from just about anywhere. By the time the intestine is that damaged, the patient has been very ill for a long time.

 

--If someone has been avoiding gluten, the intestine has had the opportunity to repair itself. The only way to get an accurate scope at that point is for the patient to eat gluten consistently for an extended period of time so that the gut becomes damaged. Who would ever want to do that?

 

I don't think there is any good reason to push for testing when you KNOW the effect gluten has on you. Tell your doctor to put in the chart suspected celiac or gluten intolerance based on symptoms. Leave it at that.

[Jen in PA]

My doc was certain I had celiac and the bloodwork said no. So they went with a diagnosis of NCGS (non-celiac gluten sensitivity) and I cut out all grains, then slowly reintroduced them one at a time. And I can handle barley and rye just fine, so for me it came down to being wheat intolerant. Cutting out wheat has changed everything for me (I have other autoimmune issues with skin/eyes/arthritis/thyroid). I am not symptom free, but very close. Even without an official celiac diagnosis, you may still have a lot to gain by giving up gluten.

[Soror]

IME, the test is useless. The gold standard and the only acceptable definitive dx that all drs seem to agree upon is a small intestinal biopsy. Which of course only covers the first section of intestine and not the whole thing. It also only consists of removing teeny tiny sections. perhaps 6- 20 small sections. This is problematic because Celaic is known to be a "patchy" disease, is not uniform or consistent in the intestine, and occurs in stages - 4 being the worst 1 the least or no damage. Basically the dr is making a best judgment call and getting a decent sampling to test under the microscope in the lab.

 

this process has a myriad of faults.

1- The pieces could be from damaged sections or not

2- One can't tell by eyeballing

3- The biopsy must get a large and diverse sample. A lot will only take 6 and call it good.

4- the lab must orientate the samples correctly and know what to look for.

5 the gi dr must agree to dx. Apparently they have a lot of leeway in being able to dx the final decision. I've heard horror stories of kids being dx in childhood only as adults have a dr insist on redoing the test on a gluten free diet and then when the results are negative (which they should be at that point) insisting they don' have Celiac. Others won't dx at stage 3 only at stage 4. Others will call stage 2 preCeliac and demand another year of ingesting gluten and a retest to see if more damage has occurred.

 

 

the best method and the one that all of our drs pretty much poo-pooed was a year long gluten free diet and then a challenge. 3 of us failed the challenge miserably and horribly. Only the ped would dx the kids with Celiac. The rest said not conclusive enough.

 

I have found no reason to have a positive test result. I tell the drs I have Celiac. I demand that all meds be gluten free or substitutes found. I do the same for the kids. NO ONE has ever once questioned or asked for results to prove it. Perhaps if they were in school, there might be a reason. I found reasons not to have a dx. insurance refused the kids their own private policy and the work policy raised the rates.

 

Check the letter. It should be the lab results. If not, call back and get them. If you have any antibodies, you are having a reaction to gluten. My question that has never been answered is at what point do those antibodies become a problem for me? When they are at 2, 5, 100? Everybody's body is different and some may have sky high results with no symptoms and others may have a measly 2 and lay on the floor ready to die from gluten.

 

we found all the testing,probing,and poking was a waste and just made things muddier. I should have saved the money and bought some gluten free cookies.

I agree with all of that! I am glad you spent the time to go into more of the reasons why the current testing methods used are so horrid.

[Greta]

Tell your doctor to put in the chart suspected celiac or gluten intolerance based on symptoms. Leave it at that.

 

Based on my symptoms, he did diagnose me as, I forget which term, either gluten sensitive or gluten intolerant, and he wrote it in big letters on my chart! :D. Sounds like that may have to be good enough as far as a diagnosis goes.

[jplain]

I deliberately ate some gluten about 12 hours before the test. Would that be enough to trigger the response that would be measured in the blood tests?

Conscientious gastroenterologists ask for something in the ballpark of 2-4 slices of bread every day for 6-12 weeks before the scoping. So if you were eating no gluten or only trace/contamination gluten before the test, then no, it wouldn't have been enough.

[Jenny in Atl]

Both my kids just had the blood panel done. Their #'s were off the chart, so I saw no reason to put them through the scope for an "official" dx. If this is a issue, faith wise, is gf bread allowed? I can't believe God would not understand you skipping the gluten, if it's hurting your body. Wine is GF and mighty fine!

[Greta]

Regardless, I think it matters little. A gluten free diet is a healthy one. One doesn't need gluten to be healthy, there are no nutrients contained in gluten foods that are not contained elsewhere.

 

I agree completely, and I KNOW I am healthier without it!

 

I don't do communion anymore. I do wine, but no bread.

 

In the Orthodox Church, the bread is always put into the same big chalice as the wine. So it's all in there together. Still, I can talk to my priest and see what the options are.

[keptwoman]

I deliberately ate some gluten about 12 hours before the test. Would that be enough to trigger the response that would be measured in the blood tests?

 

No. You need to consume a considerable amount, i.e 2-4 slices of bread for about 6 weeks before the test for it to have any chance of being accurate.

 

I had EXACTLY the same thing happen, and my dr insisted that one "gluten up" was enough for an accurate blood test. It was negative and I sat and cried in her office because I just wanted an answer. Three years later I finally saw a specialist in Coeliac who groaned when I told him and bemoaned how uninformed doctors are.

 

I have the gene, I will not go back on gluten for the biopsy, for all the reasons Servin has listed. I am gene positive and have lots of coeliac symptoms including the rash which the name escapes me right now. So I just choose to tell people I'm coeliac, no one questions how I know. Even the specialist while not willing to declare me coeliac without a biopsy was happy for me to ask to be treated and monitored (for liver diseases, osteoporosis and auto immune issues)as if I was.

So I don't still 100% have my answer, but I'm making do with what I do have. And I never eat gluten, and if I took communion, that would include communion.

Edited December 1, 2010 by keptwoman

[Greta]

My question that has never been answered is at what point do those antibodies become a problem for me? When they are at 2, 5, 100? Everybody's body is different and some may have sky high results with no symptoms and others may have a measly 2 and lay on the floor ready to die from gluten.

 

I wondered about this too! With cholesterol, if you're at 239 they'll call it normal but if you're at 240 it's high. Well, if I'm at 239 I want to know it, because that's not the same as being at 180, which would also be considered normal! I'm actually not a big believer in cholesterol as an indicator of health, but I'm using an example.

 

But this isn't like cholesterol, right? If I tested positive for ANY amount of those antibodies, doesn't that mean something is wrong?

[jplain]

I lean towards yes, but I would talk to my priest about it, and I would welcome your elaboration.

As little as a single ingestion of 1/8 tsp of flour has been shown to cause intestinal damage. It is likely that even smaller amounts will cause damage that is currently impossible to detect.

 

The intestinal damage caused by celiac disease has several possible long term consequences. First, there's difficulty absorbing certain micronutrients, which can lead to diseases of deficiency. Second, those who are noncompliant with a completely gluten-free diet remain at elevated risk for GI tract cancers, osteoporosis, infertility, and diagnosis of additional autoimmune diseases, such as type I diabetes (yes, even in adults), rheumatoid arthritis, lupus, etc.

 

Celiac + another autoimmune disease is a frighteningly common story. How would a gluten-free diet protect you? One newish theory of autoimmune diseases is that they may be linked to intestinal health. A healthy gut lets the stuff in that it is supposed to, and keeps out the stuff that should stay out. But a damaged intestine may be allowing stuff into your bloodstream that shouldn't be there. Those things may trigger autoimmune reactions that could progress to a variety of autoimmune diseases, depending on your genetic susceptibility.

 

In your shoes I'd ask the church about the possibility of obtaining gluten-free communion bread. If it is not possible, or if church personnel cannot be trusted to avoid cross-contamination, I'd talk to my priest about my options as a person of faith who is reluctant to take part in a communion ritual that damages my health.

[Greta]

And I can handle barley and rye just fine, so for me it came down to being wheat intolerant.

 

Oh, interesting. I've never tested myself with barley or rye. When I was visiting a friend recently, she graciously took me out to an Ethiopian restaurant. She said she had looked it up and that teff, the grain from which the bread was made, was gluten-free. So I totally pigged out on that delicious soured flatbread. That was great stuff! And then I got sick as a dog. I looked it up online and some websites said teff is gluten free and some said it is not. Whichever is the case, I won't be eating it again. As good as it was, it wasn't worth that misery!

[keptwoman]

Oh that's interesting. I've seen Teff as an ingredient in a lot of GF items.

I think also, often in restaurants there is cross contamination.

[Greta]

No. You need to consume a considerable amount, i.e 2-4 slices of bread for about 6 weeks before the test for it to have any chance of being accurate.

 

Oh. Well that test was basically a total waste of time and money, then. I called a few days before I went in to get the blood drawn to ask them how much gluten I should eat before the test. They told me NONE! But that didn't make sense to me so I ate some anyway. Nowhere near that much, though!

 

 

It was negative and I sat and cried in her office because I just wanted an answer.

 

Thank you for sharing this. Now I don't feel quite so crazy for having felt more disappointed by the news that I didn't have Celiac than the news that I did! It just seemed to explain so much! So when they said I didn't have it I was upset because I felt utterly confused.

[Soror]

Teff is gluten free but from by reading about Injera(the Ethiopian flatbeard it may or may not be made w/ 100% Teff).

 

Sad to read that they did not give you the full info on how much gluten you need to consume for accurate results.

[Greta]

Thank you, jplain. You have sufficiently scared me. :D The amount in communion doesn't cause me any noticeable reaction, but if it is true Celiac, then I guess that means nothing.

 

I will talk to my priest. He is very kind and accommodating! I recently spoke with him about the fact that my dietary restrictions would make it exceptionally burdensome if not impossible to do the traditional Orthodox fast. He agreed that my allergies and intolerances are a case where economia is called for, and he gave me a VERY modified version of the fast to follow instead. I'm sure he would be willing to work with me, and is probably already doing something to accommodate the other family in our parish that is affected by Celiac.

[keptwoman]

Thank you for sharing this. Now I don't feel quite so crazy for having felt more disappointed by the news that I didn't have Celiac than the news that I did! It just seemed to explain so much! So when they said I didn't have it I was upset because I felt utterly confused.

Yeah, my doctor clearly thought I was wacko and couldn't comprehend why I'd want a postive result. Well she hasn't lived for 10 years with debilitating pain on a daily basis.

I just had to focus on what I knew: no gluten=no pain, no bloating, no funny rashes, no odd digestive things, no fatigue etc etc etc.

 

And fwiw, as far as the communion bread, if I have a marshmallow which has been dusted with wheaten cornstarch, that is enough to make me sick for a month. I'd say that if you can work out something on the communion front, you'd feel even better.

[Greta]

Oh that's interesting. I've seen Teff as an ingredient in a lot of GF items.

I think also, often in restaurants there is cross contamination.

 

Hmmm. . . Maybe gluten was used in one of the other dishes we ate (to thicken a sauce or something?) and the teff really wasn't the problem. It tasted too good to be true, so I assumed it was the problem! I hate most gluten free bread and pasta "foods" so this seemed heavenly.

 

Another possibility is that maybe it isn't actually gluten triggering my problems. I know I get less severe reactions from corn, black beans, pinto beans, and kidney beans, which are all gluten-free. But they don't affect me as severely and this was pretty severe. Sigh. I really don't know what's going on!

[Greta]

Teff is gluten free but from by reading about Injera(the Ethiopian flatbeard it may or may not be made w/ 100% Teff).

 

 

 

Aha! Thank you for explaining this!

[Greta]

Yeah, my doctor clearly thought I was wacko and couldn't comprehend why I'd want a postive result. Well she hasn't lived for 10 years with debilitating pain on a daily basis.

I just had to focus on what I knew: no gluten=no pain, no bloating, no funny rashes, no odd digestive things, no fatigue etc etc etc.

 

I've had a rash a few times which my doc said was hives. It didn't look to me like hives I've seen on other people, and my mom said "that isn't hives!" when she saw it. What does the celiac rash look like?

 

I've got all the rest of that! Or did. Plus allergies and a weak immune system -- I always get secondary infections when I get sick with anything, even the common cold.

 

And fwiw, as far as the communion bread, if I have a marshmallow which has been dusted with wheaten cornstarch, that is enough to make me sick for a month. I'd say that if you can work out something on the communion front, you'd feel even better.

 

Wow! Just . . . Wow! Do you never eat out? If you are that sensitive, I would think it would be virtually impossible to eat anywhere but your own home.

[keptwoman]

http://www.coeliacsociety.com.au/con-derm.html

That's about the rash. I don't get a particularly obvious rash, just crazy itching. I used to think it was washing powder, and kept changing but it never made a difference. Then it just disappeared when I went GF, and comes back if I get glutened, but I need a decent glutening for it to come. It took a couple of reappearances for me to realise the connection. The reason I went off gluten was the pain and bloating, that the rash, fatigue and general suseptibility to illness (constant colds and UTIs) went away too was very much a surprise.

 

I don't eat out much, no. I don't like to eat where chefs and wait staff don't know what they are talking about. I don't like much ethnic food because things containing gluten can get lost in translation. I also get fed up with the limited choices available to me, most of which I could eat at home, I like to eat something different in a restaurant kwim? The best restaurants seem to be the fine dining ones as they focus on fresh, uncomplicated ingredients, but we can't often afford those places.

[jplain]

When I was visiting a friend recently, she graciously took me out to an Ethiopian restaurant. She said she had looked it up and that teff, the grain from which the bread was made, was gluten-free. So I totally pigged out on that delicious soured flatbread. That was great stuff! And then I got sick as a dog. I looked it up online and some websites said teff is gluten free and some said it is not.

Teff is definitely gluten free, so traditionally-prepared injera is fine.

However, a lot of Ethiopian restaurants in the US use flour mixes that include Bisquick to make injera.

Yes, I said Bisquick. And as you're probably aware, Bisquick is not gluten free. :tongue_smilie:

[athena1277]

 

I have the gene, I will not go back on gluten for the biopsy, for all the reasons Servin has listed. I am gene positive and have lots of coeliac symptoms including the rash which the name escapes me right now. So I just choose to tell people I'm coeliac, no one questions how I know. Even the specialist while not willing to declare me coeliac without a biopsy was happy for me to ask to be treated and monitored (for liver diseases, osteoporosis and auto immune issues)as if I was.

So I don't still 100% have my answer, but I'm making do with what I do have. And I never eat gluten, and if I took communion, that would include communion.

 

You do know that you can have one or both genes for CD and not have it, right? My dd has CD (positive blood work and biopsy). Ds's cord blood was tested at birth and he does have one of the 2 genes. He's 3 now and still does not have CD. He was in a research study from birth til he turned 3 for CD and was tested every 6 months, so I know he definitely did not have it as of 5 months ago. It is possible he will never develop it.

 

I'm not saying that you do not have CD. I just wanted to clear up any confusion.

[Parrothead]

I'm going to throw this out there just in case. I had a friend that thought she had celiac disease. Turns out her well water was bad. She and her family were being slowly poisoned by arsenic.

 

So maybe if nothing else, you can have your water tested and see if that is causing any problems.

[Greta]

I'm going to throw this out there just in case. I had a friend that thought she had celiac disease. Turns out her well water was bad. She and her family were being slowly poisoned by arsenic.

 

So maybe if nothing else, you can have your water tested and see if that is causing any problems.

 

Holy cow. I live in the city with the second highest arsenic levels in the water, in the whole US (or at least Ive heard that stat a lot around here). I'll look into it.

[keptwoman]

You do know that you can have one or both genes for CD and not have it, right?

Sure do :) Hence my saying that I won't have the biopsy so I don't have a concrete diagnosis.

[Greta]

I'm going to throw this out there just in case. I had a friend that thought she had celiac disease. Turns out her well water was bad. She and her family were being slowly poisoned by arsenic.

 

So maybe if nothing else, you can have your water tested and see if that is causing any problems.

 

Chucki, thanks for mentioning this. I looked into it a little, but I don't think that's what's going on with me. I have some of those symptoms but not many, and the ones I do have are definitely triggered by eating grains. The correlation is too clear to be coincidence. But I truly appreciate you mentioning this! Its good to know for sure.

[Greta]

http://www.coeliacsociety.com.au/con-derm.html

That's about the rash. I don't get a particularly obvious rash, just crazy itching. I used to think it was washing powder, and kept changing but it never made a difference. Then it just disappeared when I went GF, and comes back if I get glutened, but I need a decent glutening for it to come. It took a couple of reappearances for me to realise the connection. The reason I went off gluten was the pain and bloating, that the rash, fatigue and general suseptibility to illness (constant colds and UTIs) went away too was very much a surprise.

 

Thanks for this information. I'm not sure from the description if that is what I had or not. The look of the bumps, like insect bites, matches. Both times it happened it was after a really high "dose" of gluten. But the distribution on my body was a bit different: mostly hands and forearms, and knees to ankles, though other places too, and on the worst occasion I was simply covered head to toe.

 

I guess I'll never know for sure. But I should at least hear back from my doc today about the blood tests he did, and maybe that will shed SOME light.

 

Thanks again to everyone who replied! I really appreciate all the help!

[Parrothead]

Chucki, thanks for mentioning this. I looked into it a little, but I don't think that's what's going on with me. I have some of those symptoms but not many, and the ones I do have are definitely triggered by eating grains. The correlation is too clear to be coincidence. But I truly appreciate you mentioning this! Its good to know for sure.

Sure thing.

 

I will say that my friend seriously thought it was celiac because it runs in her family (mom and sister, I think) and she would have symptoms when she ate wheat.

 

I don't know the science behind it or if one can effect the other. I also know nothing other than what she told me. And I certainly don't know what is going on in your body better than you do. But it couldn't hurt to have a blood test just to make sure you (and possibly your family) aren't being poisoned.

 

Up to you. No pressure. I'll not say anything else about it. :grouphug: Hope you feel better soon.

[jplain]

The look of the bumps, like insect bites, matches. Both times it happened it was after a really high "dose" of gluten. But the distribution on my body was a bit different: mostly hands and forearms, and knees to ankles, though other places too, and on the worst occasion I was simply covered head to toe.

Were they itchy? If yes, I vote hives, and I'll have a LOT more to say about it. :D

[jplain]

I don't know the science behind it or if one can effect the other.

Bolding mine. Nothing is impossible. Here's a possible scenario off the top of my head: arsenic poisoning is causing leaky gut which has now resulted in sensitivity to wheat or gluten. So knowing that there's symptom overlap, I'd get testing for arsenic (and any other likely suspects), just to cross it off the list. I get semi-annual vitamin D and vitamin B12 checks, so I'd just have it added to one of those lab slips.

[Greta]

Up to you. No pressure. I'll not say anything else about it. :grouphug: Hope you feel better soon.

 

I appreciate it. :001_smile: I will definitely keep this in mind. I'll talk to my doctor about it.

[Greta]

Were they itchy? If yes, I vote hives, and I'll have a LOT more to say about it. :D

 

Yeah, they were itchy! Doc told me to take benadryl at night, Zyrtec during the day, and apply a cream to them as needed. Even with all of that, they drove me crazy for FOUR DAYS.

 

I'm :bigear:

[Greta]

Bolding mine. Nothing is impossible. Here's a possible scenario off the top of my head: arsenic poisoning is causing leaky gut which has now resulted in sensitivity to wheat or gluten. So knowing that there's symptom overlap, I'd get testing for arsenic (and any other likely suspects), just to cross it off the list. I get semi-annual vitamin D and vitamin B12 checks, so I'd just have it added to one of those lab slips.

 

Hmmm . . . I found an article which avoids telling us what the actual level of arsenic in the local water supply is, but does say that a new federal standard lowering the acceptable levels from 50 ppb to 10 ppb will require new filtration systems and raise the cost of our water.

 

I've been drinking this water for 12 years. My daughter has been drinking it her whole life. Prior to this, I lived for four years in a city which, according to local legend, had the highest arsenic levels in the country.

[Greta]

I just got a call from the nurse at my doctor's office, and here are the results she told me, with the caveat that I am probably not spelling much of this correctly!

 

The Celiac Reflex Panel was 138, which is considered normal.

 

The Celiac Tissue transglutaminase ABIGA was 1, also normal.

 

I don't know what these numbers mean, unfortunately, but if they are indeed normal, then I am going to give serious though to jplain's possible scenario of leaky gut causing a gluten sensitivity. In addition to the arsenic, I've heard that leaky gut can be caused by antibiotics, and while I've never been on them for an *extended* period, there have been many occasions (UTI's, sinus infections, pneumonia) where I've had to take them. I'm also thinking about trying the GAPS diet. Because, you know, my restrictive diet isn't a big enough pain in the butt already. :D

[jplain]

Yeah, they were itchy! Doc told me to take benadryl at night, Zyrtec during the day, and apply a cream to them as needed. Even with all of that, they drove me crazy for FOUR DAYS.

 

I'm :bigear:

Those sound like the hives I get, and they're most definitely caused by food intolerance, though gluten has never been one of my triggers. My hives are also concentrated on lower legs, feet, forearms, and hands. They're much worse (shoulders to toes) in the early postpartum months or if I've eaten stuff that I'm intolerant to, usually in a restaurant where I don't have a full ingredient list. Thankfully I have found a few "safe" restaurants, and high end restaurants are usually a good bet too, when we can afford it once in a blue moon.

 

Be careful with Benadryl cream when treating hives. It is readily absorbed through your skin, so it is really easy to overdose yourself. (Ask me how I know. ;)) It is only supposed to be used on small areas of skin. However, if you're like me, you probably just ignore the hives until you've got large and miserably itchy patches.

 

Ultimately, I'm not a fan of suppressing symptoms with drugs. Also, I seem to be accumulating adverse drug reactions, likely the drug corollary to food intolerances. (I can no longer take advil, ibuprofen, naproxen, penicillins, and tetracyclines. I live in Lyme country, which is the reason for the antibiotics.) So instead I've put my effort into trying to figure out and avoid my triggers. Rather than write a novel here, I'll PM you instead. :D

[jplain]

The Celiac Reflex Panel was 138, which is considered normal.

 

The Celiac Tissue transglutaminase ABIGA was 1, also normal.

That transglutaminase antibody result is encouraging. However, if you weren't consuming fairly large quantities of gluten at the time the blood was drawn, these numbers won't give you any idea of how your body really reacts to gluten... :(

 

If you don't want to go high gluten in order to retest, just go with the results of your own elimination and challenge. If a big bowl of plain pasta gives you grief, no more wheat for you, including communion bread. And if a big bowl of cooked barley does the same thing, eliminate all gluten. In case you haven't yet seen a list of lesser known sources of gluten, you have to be very careful about oats, rye, anything with the words barley or malt, most soy sauce, and a whole bunch of other hidden sources of gluten.

[Supertechmom]

Servin, thanks for this information! Can you tell me more about what the "challenge" is and how it is evaluated?

 

The challenge was a gluten meal. And did we ever pig out! Baby girl had diarrhea for 3 straight weeks, oldest had what you might call "food poisoning" for the night until his system was emptied from both ends, middle child simply "fogged" mentally for 3 days, and I was in so much pain for the next week, I couldn't move without serious pain meds.

 

Yeah, my doctor clearly thought I was wacko and couldn't comprehend why I'd want a postive result. Well she hasn't lived for 10 years with debilitating pain on a daily basis.

I just had to focus on what I knew: no gluten=no pain, no bloating, no funny rashes, no odd digestive things, no fatigue etc etc etc.

 

And fwiw, as far as the communion bread, if I have a marshmallow which has been dusted with wheaten cornstarch, that is enough to make me sick for a month. I'd say that if you can work out something on the communion front, you'd feel even better.

 

 

The Celiac rash (Dermatitis Herpetiformis -scroll down to the page) will often test NEGATIVE on the intestinal biopsy. If you get the rash, chances are good you don't have intestinal systems or damage thus no positive test. You need to see a dermatologist who specializes in Celiac cases and can perform the correct skin biopsy of the rash to have it confirmed.

 

And that arsenic thing is interesting. I'm going to check into that since we don't have a positive biopsy result. One just never knows. I'll be pissed to have missed some of my favorite foods in this life only to die from arsenic poisoning! :D

[Greta]

That transglutaminase antibody result is encouraging. However, if you weren't consuming fairly large quantities of gluten at the time the blood was drawn, these numbers won't give you any idea of how your body really reacts to gluten... :(

 

Right. I forgot about that. :mad:

 

If you don't want to go high gluten in order to retest, just go with the results of your own elimination and challenge. If a big bowl of plain pasta gives you grief, no more wheat for you, including communion bread. And if a big bowl of cooked barley does the same thing, eliminate all gluten. In case you haven't yet seen a list of lesser known sources of gluten, you have to be very careful about oats, rye, anything with the words barley or malt, most soy sauce, and a whole bunch of other hidden sources of gluten.

 

Bread, beer, pasta, oatmeal, and the Ethiopian bread have all given me grief. But I've never tested barley or rye. Not a big fan, so haven't really been tempted to eat them. But I could test if you think it is worth it. I don't want to go high gluten to re-do the blood test. It's not just the digestive upset, which is BAD, it's also the sneezing and runny nose, the hives, the getting sick for weeks and having to take antibiotics. No, just not worth it.

[Greta]

The challenge was a gluten meal. And did we ever pig out! Baby girl had diarrhea for 3 straight weeks, oldest had what you might call "food poisoning" for the night until his system was emptied from both ends, middle child simply "fogged" mentally for 3 days, and I was in so much pain for the next week, I couldn't move without serious pain meds.

 

Oh, you poor dears! My reaction is pretty bad, but it isn't that bad. I guess I have a lot to be grateful for. For me, the digestive upset lasts for two or three days, but not three weeks! Aggggh.

[Supertechmom]

I just got a call from the nurse at my doctor's office, and here are the results she told me, with the caveat that I am probably not spelling much of this correctly!

 

The Celiac Reflex Panel was 138, which is considered normal.

 

The Celiac Tissue transglutaminase ABIGA was 1, also normal.

 

I don't know what these numbers mean, unfortunately, but if they are indeed normal, then I am going to give serious though to jplain's possible scenario of leaky gut causing a gluten sensitivity. In addition to the arsenic, I've heard that leaky gut can be caused by antibiotics, and while I've never been on them for an *extended* period, there have been many occasions (UTI's, sinus infections, pneumonia) where I've had to take them. I'm also thinking about trying the GAPS diet. Because, you know, my restrictive diet isn't a big enough pain in the butt already. :D

 

I would ask for a copy. The ranges are listed on the lab sheet. What if the range is <140 negative >140 positive? The ranges would make the numbers have some sense in reference. And if the TTG is a 1, that means you do have some tissue damage (I know I'm not referencing that right but it's some kind of tissue issue) from SOMETHING. Different labs run different values so without those ranges, it's impossible to tell if they are high, low, close. Plus if I remember right the test needed to have AGA, IGA, ttg run and so you should have more numbers. And you need to know if you are IGA deficient as that will skew the results.

 

Some links to hte blood work tests http://www.uchospitals.edu/pdf/uch_007935.pdf

 

http://www.csaceliacs.org/celiac_diagnosis.php

[Storm Bay]

I'm not celiac, and had the test to prove it. However, I cannot tolerate gluten. This was finally confirmed with and ELISA test; I have a very strong immune reaction to it, but it's an IGg reaction, which means it's not technically an allergy and normal allergy tests didn't reveal it. I have a friend who doesn't have celiac either who reacts very violently to gluten but not with a traditional allergic reaction, too.

 

My dd had a leaky gut and can now eat gluten, but that isn't my case. Ds cannot have gluten--it makes him feel gloomy/depressed.