Another Celiac/Gluten intolerance thread...advice

[dancer67]

So I have been seeing a Naturopath who I like very much. Today she mentioned to me that I could possible have Celiac's Disease. Or Gluten intolerance. She suggested a blood test, but I have read on here that these bloodtests are not very accurate.

 

Here is what I have for symptoms:

 

IBS(I do not have bowel issues, I had sever stomach pains in my pelvis area in 2006 and was tested for everything under the sun, and they determined finally I had IBS, and put me on Librax. I have been pain free since then)

 

Iron Deficiency Anemia. I see a hematologust for this. He says it is from my periods. I do have somewhat of a heavy flow the first two days, and it comes every 24 days. I saw the GYN and it all checked out fine. Colonoscopy was not ordered, I had sigmoid done recently. I have no heartburn, acid reflux or anything. So endoscopy was not ordered. Which is fine by me because I am petrified of any tests that I need to be put out for.

 

Vitamin D deficiency

 

Angular Chellitis: This is where you get cracks in the corners of your mouth and it looks like you are frowing. I get this off and on. Probably for about 5-6 years now. Dr says I have a Vitamin B2(riboflavin deficiency)

 

Dandruff. To the point it can get crusty.

 

Depression

 

Anxiety

 

So, the naturpath tells me that if I have a gluten intolerance, that my body cannot absorb nutrients or vitamins properly.

 

So let me say this.

 

I have perfect B-12 and Folic Acid. I am 5'3 and weigh 155. (Put ON weight due to the Effexor). I have no other usual symptoms of gluten intolerance. Or, the "normal" symptoms.

 

If I DO have this, it would explain my anemia(rather then my periods being the culprit although I am sure a contributor). I take a lot of iron and my ferritin was a 52 after two IV infusions(up from an 8), then down to 22 after only taking iron supplements.

 

1.So, if this bloodtest I have is pretty much useless, and says negative. Should I try eliminating gluten from my diet? (Don't even bother mentioning a biopsy of my intestine. no thanks)

 

2. How long does it take for your intestine to heal and see if I can absorb my iron/vitamins better?

 

3. Is it possible to have celiac and still have other normal vitamin levels?

 

4. Nobody in my family has ever had any stomach problems, anemias, lactose problems. Does this mean you can still be gluten intolerant?

 

5. Why all of a sudden, is gluten a problem for people? I have never even heard of this until recently.

 

What do you think?

 

Thank you!

[Susann]

My dd 17 was diagnosed a little over a year ago with celiac disease. She had had stomach pains that had progressively gotten worse over the previous two years. She had gotten to the point that she couldn't even get through a meal without laying down with the heating pad. She also developed anemia, and dairy intolerence among other symptoms. She was 5'5" and was down to 110 lbs even though she ate like a horse. We had been back and forth to the drs who kept saying that she was constipated and treating me like an overprotective mother (after all I do homeschool:glare:). Apparently, they also discussed bulima/aneroxia with her-and not me-while I was out of the room during one of the visits. Needless to say, we no longer use that dr! I finally had enough and took her to a gastroenterogolist (sp?). He walked in took one look at her (she is blond haired, blue eyes with a very, very fair complexion) then me and asked if we had any western European background. I found out later that certain European countries and Australia have a much higher occurance of CD. He then looked over her chart, talked to her and within ten minutes said that he thought she had celiac disease. She had a blood test that day that came back positive. We then scheduled an upper GI to validate the bloodwork and to assess the damage. The villi in her intestines had been almost completely destroyed. She was literally starving to death even though she was eating a very large well-balanced diet. Once gluten was eliminated from her diet she felt better within a day or two and substantially better with a month.

 

To answer some of your questions:

 

-Unless you are dealing with a dr very familiar with celiac disease it can take years to diagnose through the process of elimination of other conditions.

 

-There are as many different symptoms of celiac disease as there are people who have it (much like the different styles of homeschooling:tongue_smilie:) which is why it tends to be diagnosed through the process of elimination.

 

-The bloodwork can give a false negative. Only the upper GI can positively diagnose celiac disease and the amount of damage done.

 

-Don't just stop eating gluten. If your symptoms go away, you don't really know if it's due to gluten or another factor. Without the upper GI, you don't know the amount of damage.

 

-Here in the US a great deal of our medical research is done by the drug companies. There is not a drug to combat celiac disease so the companies aren't researching it. In large part, because there is not a drug to treat it, it hasn't been on the radar in the medical community.

 

-No one else in our family-immediate and extended- has dealt with the health issues my dd has. No one, as far as we know, has celiac diease.

 

-There are long term health ramifications such as infertility and increase in cancers among many, many other health issues.

 

-The healing process varies per patient. My DD had another gluten panel done last month due to other health issues and was found to be gluten free. We opted not to have another GI to determine how much her intestines have healed since she is gluten free and healing can vary so much.

 

- And, my pet peeve-IT IS AN AUTOIMMUNE DISEASE AND NOT AN ALLERGY-just like lupus, MS, etc. Your body is literally destroying itself.

 

If you think it's a possibility that you have CD, I highly encourage you to overcome your fear of the upper GI and get a positive diagnosis just so you can eliminate it as a source of your health issues or treat it. This is not just for yourself but also for your children. A great resource is the book "Celiac Disease: A Hidden Epidemic". Also, you might want to read Elizabeth Hasselbeck's (sp?) book on her personal struggle to get diagnosed and then to treat celaic disease. I forget the name of the book but Elizabeth is the blonde on The View.

 

Good luck in your search for answers to your medical issues!

[littleWMN]

I have Celiac Disease. I had all the same symptoms (down to the dandruff) as you minus the IBS (NEVER had GI problems) plus muscle aches and headaches and fatigue. Please get tested.

 

I had a repeat endoscopy after being GF for 6 months and my villi had started to return (they were completely flat). Healing can take a few years in some people. I've been GF almost 3 years and still struggle with fatigue, but it's gotten a lot better.

[GypsieFamily]

I would

[Harriet Vane]

I think your symptoms are quite compelling. In your shoes, I would do the upper GI and the blood test. The tests may be imperfect, but they can offer information that will help you.

[greenmamma]

My husband was diagnosed as celiac positive by biopsy at age 2. At around age 18 or so he decided to stop following his gluten free diet. At one point my husband was 145 lbs on his 6'2" frame...not healthy at all.

 

He continued this course for several years, sure that everything was fine because his blood work always came back as good. His vitamin levels were never deficient, and his tTG was fine.

 

Upon going back onto a gluten free diet he gained about 30 lbs in 6 months. No more dark eye circles, exhaustion, stomach aches.

 

Now we have two kids...8 year old and 9 year old that are both miserable on gluten. Both of their blood works came back neg. I know that my then 6 year old being angry all the time, throwing himself on the ground, and being sent to the principals office 3 times in 2 weeks(pre-hs'ing), stopped all of these negative behaviors inside of a month off of gluten. My daughter's symptoms were more GI, and and arguing/attitude. Not perfect but not throwing things any more! And honestly, I didn't change my parenting at all!

 

Anyways...not sure if that was much help. Just our experiences. I would have preferred to have a biopsy done after the neg results to know for sure. I have a family Dr that thinks "why should we bother if we know Daddy has it for sure and kids feel better? Just eliminate it."

[texasmama]

1.So, if this bloodtest I have is pretty much useless, and says negative. Should I try eliminating gluten from my diet? (Don't even bother mentioning a biopsy of my intestine. no thanks) You can be gluten intolerant without intestinal damage. Many people don't process gluten well and it causes them issues, but they don't have the classic intestinal damage caused by celiac disease. Yes, eliminate gluten (make sure you do it thoroughly because it lurks in unexpected places.) Celiac.com has great information for anyone going gluten free.

 

2. How long does it take for your intestine to heal and see if I can absorb my iron/vitamins better? If you have intestinal damage due to gluten, the time it takes to heal varies widely. Several months might be a good estimate (up to six months). It depends on your age, your general health and the extent to which your intestines are damaged (if they are).

3. Is it possible to have celiac and still have other normal vitamin levels? I have no idea.

 

4. Nobody in my family has ever had any stomach problems, anemias, lactose problems. Does this mean you can still be gluten intolerant? Yes, you can be. Also, celiac disease can be triggered at any point in a person's life. You could be 60 years old and suddenly your genetic predisposition is "switched on" and you develop celiac disease. Gluten intolerance is generally thought of as having difficulty with gluten without intestinal damage.

 

5. Why all of a sudden, is gluten a problem for people? I have never even heard of this until recently. I think that many people have issues with gluten which are "low level" and fly "under the radar". A gluten free diet won't harm anyone, not that all need it. Our wheat products have changed drastically from those hundreds of years ago, and the result is a higher gluten content. I believe that the theory is that people have developed more issues to gluten as a result, because our bodies are exposed to more of it.

 

What do you think? I think it sounds pretty painless to try a gluten free trial of a month or so. (It is a huge adjustment at first, though.) My three youngest kids and I have been gluten free for three years now due to celiac disease of the two youngest ones. I do it as a preventive measure due to a strong family history of celiac disease and also in support of my kids.

 

Thank you!

 

hope this helps!

[dancer67]

The thing is I feel fine. I was always asymptomatic with the anemia.

 

I am not fatigued or tired. I go and go. I dance, and go out, and exercise.

 

My anemia was found on accident.

 

And I certainly have not lost any weight.

 

I am not lactose intolerant.

 

I am not so sure I want to go as far as an endoscopy. And I have heard those tests are not accurate either. I have been through so much testing .Unless it is life or death I will skip the endoscopy, for now anyways.(Yes, I am petrified, and I just cannot put myself through all that stuff again).

 

In reading the Celiac site, it also states that people who have this cannot absorb B12 or Folate. My levels of this are fine. Actually, they are really good. So how can one absorb B12 and Folate through the small intestine, but not iron?

 

The angular chellitis might be a B2 deficiecny from the antidepressents I am taking. It inhibits absorption. Or it could be just because it is winter, and I always get this in the winter time. Never summer. I don't know.

 

I might try a gluten free diet even if test comes back negative and see. If things improve I will know. And it is healthier anyways from what I understand right? Thank you for all your help.

Edited January 8, 2011 by dancer67

[melissel]

I'm another who will say yes, just go ahead and do it. Several years ago, I watched my BFF's sister-in-law go through the wringer trying to resolve issues that ended up being CD. She was told she did not have it several times. Since then I've heard more and more stories about a general gluten sensitivity that plagues people in so many ways.

 

My gluten issues are digestive-system related. I won't go into them here, but I will say that they'd been going on for years, and I just chalked it up to being overweight/not eating well. They were affecting my whole life, my marriage, my moods, whether or not I could leave the house. When I eliminate gluten, they're almost entirely gone within a few days. Personally, I don't even have to worry about cross-contamination except in things where its very common, like oats, and I don't have separate food prep areas, etc. I simply avoid gluten-containing products, and I'm 90% better. (If I cut out grains entirely I'm 100%, but I'm working toward that more slowly!).

 

Regarding your periods and anemia, I also notice a HUGE change in my periods when I'm gluten-free (and eating very few carbs in general). My periods went from 6 days to 3/3.5. The intense cramps I'd have in the middle of my cycle disappeared. The gluten issue absolutely can have an impact on that part of your body too.

 

Honestly, it was hard but not impossible to go GF. I didn't search for a lot of substitutes, I just gave up bread and starting making most meals without gluten. Most of our meals don't have a carb at all. I try to make sure the kids get enough complex carbs in their snacks, and they can have whole wheat/whole grain products once a day. I have a great all-purpose GF mix, and when I'm really craving, I make drop biscuits.

 

As to why so many people have issues these days, gluten is what makes baked goods light and fluffy, and you know everyone likes their baked goods fluffy! The wheat that we eat now has something like 60% more gluten than heirloom varieties. Also, I think people are eating more whole wheat and whole grain products now, but in order to make those fluffy enough to be appealing, even more wheat gluten has to be added. Plus, we eat wheat and wheat by-products in so many processed foods, so many times a day. I didn't realize just how much we ate until I needed to stop eating it!

 

I say, just do it. If you go GF for a few months and don't see any change, then you don't need to deal with doctors and testing (at least for this, anyway).

 

I'm sorry you're dealing with it :( :grouphug:

 

ETA: I was typing while you posted. I wanted to add that I don't think I have CD. I think I have a gluten sensitivity. I didn't notice vast changes in my energy level when I switched. I noticed only that my digestive issues vanished and my terrible all-day heartburn was reduced by more than half. (I think the other issue is caffeine, which I've not yet come to terms with giving up!) You may not have CD, but you may still benefit from getting rid of gluten. As long as you're eating a healthy diet and getting all the vitamins and minerals you need from other sources, yes, IMO, it's a healthier way to live.

Edited January 8, 2011 by melissel

[dancer67]

Well, if I was gluten intolerant it would explain some things. If it isn't then it is just seperate issues.

 

I certainly do not think it will hurt to go GF for a while and see. Besides, I need to change my diet and stop eating all this junk food anyways:lol:

[melissel]

Well, if I was gluten intolerant it would explain some things. If it isn't then it is just seperate issues.

 

I certainly do not think it will hurt to go GF for a while and see. Besides, I need to change my diet and stop eating all this junk food anyways:lol:

 

That's what I tell myself to make me feel better too: At least it forcibly cuts back on the junk I eat :lol:

 

You know, you might also look into cutting out dairy. Many of the things you described can also be caused by a dairy intolerance, and dairy by-products are in everything too.

 

This is unconventional, but the other thing that helps me immensely, even when I am eating gluten occasionally and eating more carbs than I should, is taking 50 to 100 mg of 5-HTP a day. I started taking it long before I discovered my gluten issues because I was trying to avoid going on antidepressants. It does help me in that way, enough that I don't feel the need to explore that route anymore. But the main thing I discovered is that it alleviated a large part of the GI discomfort I was experiencing. If you want, I can PM you with more detail, but it changed my life. Apparently, 90% of the serotonin in your body is in your gut, and if that's out of balance, it can throw all kinds of things out of whack.

 

If you're already on an antidepressant, you need to talk to your doc about it, but I just wanted to throw it out there. Over the past week my pill case was out of place, and I didn't take all my pills for 5 out of the 7 days. I swear it was the most miserable week I've had since I delivered my last baby! I got back on track yesterday, and today I'm a much happier woman :tongue_smilie:

[mom2koh]

When taking the blood test please remember that the blood is the last place Celiac's will show.

 

I have autoimmune problems to begin with. I had hypo-thyroid with uncontrolled numbers even after a thyroidectomy. Plus I was borderline diabetic. The gluten free lifestyle has helped these problems as Celiac's is an autoimmune issue. I have also begun to loose the weight my thyroid problems caused me to gain.

 

My daughter had every symptom in the book. Her stool test was borderline and the blood test was negative. Yet she could not make it through a meal without running into the bathroom. Once she was gluten free she began to enjoy eating! At 5 years old she was 31 pounds (with clothes on)! She has always been in the negative on the growth charts and has finally begun to gain some weight to creep into the positive percentiles. She is now almost 7 and at 38 pounds. Yea!!

 

Go with your gut on this (no pun intended). There's a lot of discrepency with testing for celiac's.

[keptwoman]

I'd get the blood test. Based on the results of that, consider the biopsy. The biopsy will give you credibility with the medical establishment which is something not to be sneezed at. I wish I had had a more proactive doctor because now I'm simply not willing to put myself through the hell of eating gluten for the test.

 

The other blood test worth considering is the gene test, which will tell you whether you are genetically susceptable. That combined with the antibodies tests will give you more info to base your decision on the biopsy on.

 

If the test is negative, I'd trial GF anyway, and I'd give it at least 2-3 months. I felt better within a month, but continued to improve more for about 6 months.

[dancer67]

I have heard wonderful things about the 5 htp supplement. I cannot take it though because I am on Effexor, and can cause seratonin syndrome. But, my goal is to get off of Effexor at some point.

 

As far as dairy, I am not sure I could do GF and dairy all at once:tongue_smilie:(I know myself, I better do baby steps!!)

 

I am going to go GF no matter what my blood tests show. I have heard many positive stories of people doing GF even without having the intolerance or Celiac's and they feel so much better.

 

I know that the endoscopy is the way to go to really diagnose it. But I just cannot bring myself to even think about that at this point. I have had so many needles, CT Scans, Ultrasounds, X-rays, GI tests, IV's and what not I am pretty worn out from it all.

 

I am hoping that by going GF, I can feel better, as well as take off some this weight I have gained. The Effexor packs on the pounds and I hate that!!

 

I have seen a number of websites listed on here for Celiac and will be looking at them over the weekend and making a diet plan. And start shopping next week. My blood test is Tuesday(my dr. is putting it in there with my normal bloodwork, for cholesterol, thyroid, and fasting blood sugars).

 

A week from Monday , I will have bloodwork again but this time will check my numbers for my anemia. I have been on supplements plus floradix and BSM, and I am curious to see if my ferritin came up at all. Although I am not going to hold my breath. I had menstrual bleeding for almost a month for the nightmare of the IUD placement, then removal 10 days later.

 

I am going to go with my "gut" on this. And something tells me that I don't have celiac, but a gluten intolerance that is causing these issues.

 

Nobody *wants* this. But in my case, I would welcome it because I would rather know it is this, then dealing with anemia from my periods and having these other issues caused by individual problems. This would be the answer to numerous problems I have been having.

 

And it would be nice to feel better, have easier periods, and know I can absorb what I am eating. What a relief that would be!

 

Thank you to all. I will update when I get my results back, even though they may not mean anything at all. And will update on my new GF lifestyle starting next week.

 

:grouphug::grouphug:

[melissel]

Nobody *wants* this. But in my case, I would welcome it because I would rather know it is this, then dealing with anemia from my periods and having these other issues caused by individual problems. This would be the answer to numerous problems I have been having.

 

I totally hear you. I felt the same way. My DH kind of rolled his eyes at me when I first started talking about it, because he thinks I look for problems. But now that he's seen the difference it's made for me, he doesn't roll his eyes anymore!

 

I really hope you find the results you're looking for. Good luck! :grouphug:

[Mama Geek]

I don't see where the testing does anything other than cost money. If you go off gluten and feel a whole lot better does it really matter? DH hasn't been tested. He knows he can't eat gluten. If he gets the smallest amount he is sick as a dog. The testing doesn't change the treatment. It is all diet related. If it isn't gluten, not eating it will prove that as well. Just my opinion.

[melissel]

I don't see where the testing does anything other than cost money. If you go off gluten and feel a whole lot better does it really matter? DH hasn't been tested. He knows he can't eat gluten. If he gets the smallest amount he is sick as a dog. The testing doesn't change the treatment. It is all diet related. If it isn't gluten, not eating it will prove that as well. Just my opinion.

 

Well, as keptwoman pointed out, having an official diagnosis can back you up in other cases when you're searching for medical advice and treatment for other things--maybe related issues, maybe not. Most doctors give the actual diagnosis far more weight than they do one's word that you've self-diagnosed gluten issues or celiac disease. IMO, that's the main reason for actual diagnosis. Otherwise, yes, I agree with you.

[dancer67]

Thank you for all the advice.

 

I had a question, as I know there are a lot of sites out there. But is there one where you can just type in the brand and type of food and see if it is gluten free?

[melissel]

Thank you for all the advice.

 

I had a question, as I know there are a lot of sites out there. But is there one where you can just type in the brand and type of food and see if it is gluten free?

 

Not that I know of (someone else might). I already cooked with a lot of whole foods, so I didn't worry too much about ingredients. For the things that I do buy processed (Bell & Evans chicken nuggets, Aidell's chicken apple sausage), I just looked in the grocery store for ones that claimed to be gluten free. Again, I don't worry much about cross contamination, so I can rely on the ingredient lists on the package. If you're wanting to eliminate it entirely, even from cross-contamination, that's a bit harder, but there are so many resources now.

 

Whole Foods and Trader Joe's are your friends (though not so much for your bank account) :001_smile:

[dancer67]

Wold this also mean eliminating things like make-ups, deoderants, soaps, etc, as well???????

[texasmama]

Thank you for all the advice.

 

I had a question, as I know there are a lot of sites out there. But is there one where you can just type in the brand and type of food and see if it is gluten free?

 

I like celiac.com. It is a large community with a lot of people and you can find a thread on most anything there. You can search within the site for a specific product. I also have good luck with typing in what I am looking for plus "gluten free" into google. For instance, "Heinz ketchup gluten free". Manufacturers will often have gluten info on their sites. It can be hard to find, though. Also, on celiac.com you will find people's anecdotal experience, such as "Cinnamon Chex makes me feel like I have been glutened even though it says it is gluten free." If 10 people say this, I will steer clear of a product even if it is supposedly gluten free.

 

I found when going gf that is easist to choose foods which are naturally gluten free. If you want to make something like a baked good, I have had great success with using a convention recipe and subbing in a gf flour blend with zanthan gum. The one I like best is 2 cups white rice flour, 2/3 cups potato starch flour (NOT the same as potato flour) and 1/3 cup tapioca flour. Zanthan gum is pricey but a little goes a long way. I keep a mixture of this gf flour blend in the pantry (minus zanthan gum, which I refrigerate). The blend is from Bette Hagman's Gluten Free Gourmet books.

[melissel]

Wold this also mean eliminating things like make-ups, deoderants, soaps, etc, as well???????

 

It can, yes, if you like to use things with any natural ingredients. For example, someone with CD might react to using products with oatmeal in them. Most (maybe all?) liquors are grain based, so you'd have to watch out for that too. Beer uses gluten-based grains. Vanilla extract is created in liquor, so you'd have to look for GF vanilla. Moldy cheeses (like blue cheese) can be a problem--most of them are started on grain products.

 

I don't eat or drink most of those things, so I haven't researched them too much and can't give you much more than that. But like dairy and soy, gluten really is EVERYWHERE.

[dancer67]

This doesn't sound like it is going to be easy. Yikes.

 

I cannot register at celiac.com for some reason. It isn't giving me the code, to say that "I'm human".......I have no idea why.

 

And I really would like to join that community to get ideas.

 

Thanks so much again for all of your help:grouphug::grouphug:

[dancer67]

One more question. When I said I had stomach pains and was diagnosed with IBS. My pains were not actually in my "stomach" but all down in my pelvic region. I only had pains, felt like getting my period kind of pains. So, is your small intestine that low?

 

The librax I take cured those pains, and have been pain free for 4 years on the librax.

 

I had a full workup of everything down there(no endoscopy though) and everything was fine. I was DX with anxiety induced IBS.

 

I am also still confused as to why my B12 and Folic acid are okay,(I am taking vitamins for both so I must be absorbinng them fine), yet be anemic? Doesn't B12 and Folic Acid pass though the small intestine as well?

Edited January 8, 2011 by dancer67

[dancer67]

:grouphug:

[keptwoman]

CD is a disease of the gut and therefore a person with coeliac disease will not react to gluten in products applied to the body. Intolerance though could make a person react to things applied to the body. Personally I do not worry about toiletries etc with gluten in them and I've never had an issue.

 

I don't know about your vitamin questions. But no, your small bowel is not low in your pelvis, your large bowel is.... I think :rofl:

Edited January 9, 2011 by keptwoman

[dancer67]

CD is a disease of the gut and therefore a person with coeliac disease will not react to gluten in products applied to the body. Intolerance though could make a person react to things applied to the body. Personally I do not worry about toiletries etc with gluten in them and I've never had an issue.

 

I don't know about your vitamin questions. But no, your small bowel is not low in your pelvis, your large bowel is.... I think :rofl:

 

Okay, I understand now. I was able to register finally at celiac.com. I figured out the issue.

 

I looked in my daughters anatomy book. Yep, your large intestine is in your pelvic area. Your small intestine is above it, but ties into your large bowel. This would explain why they would do an endoscopy for DX.

 

My pains were down near my bladder/pelvic region. Which is why I had to see so many Dr's and get so many tests before I was finally diagnosed with IBS. There is so much down there.

 

One thing I have never, ever had was heartburn. I do not even know what that feels like(thank goodness), or acid reflux?? Never had that problem. Everyone would laugh at me and say I was crazy when I would eat things that would set most people off. And it never bothered me.

 

I have never, ever had a stool that floated on the water????? It went straight down to the bottom:lol:

 

Still worth trying to see if it makes a difference.

 

Thank you again

[Guest KellyDB]

So I have been seeing a Naturopath who I like very much. Today she mentioned to me that I could possible have Celiac's Disease. Or Gluten intolerance. She suggested a blood test, but I have read on here that these bloodtests are not very accurate.

 

Here is what I have for symptoms:

 

IBS(I do not have bowel issues, I had sever stomach pains in my pelvis area in 2006 and was tested for everything under the sun, and they determined finally I had IBS, and put me on Librax. I have been pain free since then)

 

Iron Deficiency Anemia. I see a hematologust for this. He says it is from my periods. I do have somewhat of a heavy flow the first two days, and it comes every 24 days. I saw the GYN and it all checked out fine. Colonoscopy was not ordered, I had sigmoid done recently. I have no heartburn, acid reflux or anything. So endoscopy was not ordered. Which is fine by me because I am petrified of any tests that I need to be put out for.

 

Vitamin D deficiency

 

Angular Chellitis: This is where you get cracks in the corners of your mouth and it looks like you are frowing. I get this off and on. Probably for about 5-6 years now. Dr says I have a Vitamin B2(riboflavin deficiency)

 

Dandruff. To the point it can get crusty.

 

Depression

 

Anxiety

 

So, the naturpath tells me that if I have a gluten intolerance, that my body cannot absorb nutrients or vitamins properly.

 

So let me say this.

 

I have perfect B-12 and Folic Acid. I am 5'3 and weigh 155. (Put ON weight due to the Effexor). I have no other usual symptoms of gluten intolerance. Or, the "normal" symptoms.

 

If I DO have this, it would explain my anemia(rather then my periods being the culprit although I am sure a contributor). I take a lot of iron and my ferritin was a 52 after two IV infusions(up from an 8), then down to 22 after only taking iron supplements.

 

1.So, if this bloodtest I have is pretty much useless, and says negative. Should I try eliminating gluten from my diet? (Don't even bother mentioning a biopsy of my intestine. no thanks)

 

2. How long does it take for your intestine to heal and see if I can absorb my iron/vitamins better?

 

3. Is it possible to have celiac and still have other normal vitamin levels?

 

4. Nobody in my family has ever had any stomach problems, anemias, lactose problems. Does this mean you can still be gluten intolerant?

 

5. Why all of a sudden, is gluten a problem for people? I have never even heard of this until recently.

 

What do you think?

 

Thank you!

 

Hi,

 

I signed up for this forum specifically to offer a slightly different possible explanation.

 

Your symptoms:

 

IBS (Inflammatory Bowel Disease)

Anemia, unresponsive to iron

Angular Chelitis

Dandruff "crusty"

Depression and Anxiety

 

Not only is angular chelitis a symptom of vitamin b2 deficiency, but so are the others symptoms you listed, even depression and anxiety, albeit less so than the first four. All of your issues may be due to low riboflavin (b2). I'm surprised your doctor didn't see the possible connection.

 

Google "anemia" and "riboflavin" (b2). B2 is essential for forming new blood cells, and often corrects anemia when iron and other minerals won't. Vitamin A is also necessary (and not in the beta carotene form).

 

Any kind of inflammation -- especially in the mucosal tissue like the gut -- may be in part due to b2 deficiency.

 

Dandruff -- especially the 'crusty' thick kind, is again a symptom of b2 issues.

 

Of course it's important to take a multivitamin, or good b-vitamin too, and of course you may very well have gluten intolerance (a CDSA -- a stool test is the best for this) -- but it could all be due to not enough b2, especially since b12 can deplete b2 if one is taking too much b12.

 

Hope this helps.

 

Kelly

[Jill]

Hello -

 

I have celiac disease as does my son and several relatives. Our symptoms all vary somewhat. It is becoming more and more common to find celiacs who are asymptomatic and they only discover they have the disease after Drs find their iron-levels are low.

 

You are not asymptomatic and it could make sense to go through the diagnostic process, particularly since you seem to have a lot of questions and/or skepticism about the possibility.

 

I don't like celiac.com and rarely refer to it. I find the interface too cluttered and the info too disorganized overall. For diagnostic info, I like this one: http://forums.glutenfree.com/topic1893.html

 

IBS

Iron Deficiency Anemia.

Vitamin D deficiency

Angular Chellitis:

Dandruff. To the point it can get crusty.

Depression

Anxiety

 

 

So let me say this.

I have perfect B-12 and Folic Acid. I am 5'3 and weigh 155. (Put ON weight due to the Effexor). I have no other usual symptoms of gluten intolerance. Or, the "normal" symptoms.

 

1.So, if this bloodtest I have is pretty much useless, and says negative. Should I try eliminating gluten from my diet? (Don't even bother mentioning a biopsy of my intestine. no thanks)

 

My son often had angular chelitis, low-normal iron - his tTg test was very high, his biopsy positive.

I had low-normal iron, terrible fatigue, sometimes had classic symptoms, sometimes not. I was overweight most of my life. My blood test was negative, my biopsy positive. I have been losing weight while gluten-free possibly because I feel better and can actually do more physically now and also, I eat better because I eat less processed food.

 

2. How long does it take for your intestine to heal and see if I can absorb my iron/vitamins better?

This varies from patient to patient but in adults it can take up to 2 years.

 

3. Is it possible to have celiac and still have other normal vitamin levels?

yes, this has to do with the damage often being patchy in the small intestine so areas in charge of absorbing certain things might be working ok and others not so well.

 

4. Nobody in my family has ever had any stomach problems, anemias, lactose problems. Does this mean you can still be gluten intolerant?

Please look at the University of Chicago's celiac center info:

http://www.celiacdisease.net/symptoms

 

They state it well:

"There are hundreds of signs and symptoms of celiac disease, yet many people with celiac disease have no symptoms at all. In those cases, the undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for some of the complications of celiac disease."

 

 

5. Why all of a sudden, is gluten a problem for people? I have never even heard of this until recently.

Again, from UC Celiac Center: "Celiac disease can develop, in a person at risk, at any time. There are three factors that come together to cause celiac disease to occur-an over-responsive immune system, genetic predisposition, and factors in an individual's environment. "

 

A study at Mayo strongly suggests that celiac disease is now occurring four-times more often than in the 1950's. Environmental factors (which encompasses a huge amount of stuff) are considered the likely culprit.

 

Best of luck, I hope if you decide to go gluten-free without testing that you pay very close attention to doing the diet right. I 2nd the recomnendations for "Celiac Disease: Hidden Epidemic" and Elisabeth Hasselbeck's book "The G-Free Diet."

[Margaret in GA]

Okay, I understand now. I was able to register finally at celiac.com. I figured out the issue.

 

I looked in my daughters anatomy book. Yep, your large intestine is in your pelvic area. Your small intestine is above it, but ties into your large bowel. This would explain why they would do an endoscopy for DX.

 

My pains were down near my bladder/pelvic region. Which is why I had to see so many Dr's and get so many tests before I was finally diagnosed with IBS. There is so much down there.

 

One thing I have never, ever had was heartburn. I do not even know what that feels like(thank goodness), or acid reflux?? Never had that problem. Everyone would laugh at me and say I was crazy when I would eat things that would set most people off. And it never bothered me.

 

I have never, ever had a stool that floated on the water????? It went straight down to the bottom:lol:

 

Still worth trying to see if it makes a difference.

 

Thank you again

 

Just thought that I would share with you that I have tested negative for celiac with bloodtest and endoscopy, but I am definitely allergic or "intolerant" or whatever. I think you should just go without (totally and completely) and see how you feel. Save yourself the time, money, effort of getting tested. Good luck!

 

Margaret

PS I am also dairy intolerant. I think you really should consider going without both and reintroducing one to see how you feel. And give it 6 weeks. That's the only way to know for sure.

Edited February 16, 2011 by Margaret in GA
added the PS

[MyLittleWonders]

We are all gluten intolerant here. We never did the testing for celiac, but rather just removed it from our diets and noticed improvement within a month. At least three of us are also dairy intolerant (so we are all dairy free - I'm not up for some being able to eat something the other ones can't).

 

When I read about your pain in presumably your large intestine, it sounded a lot like the pain I have had on and off for many years (when I was pregnant with ds#3, it was thought to be round ligament pain; I remember about a year or so ago asking my midwife if you could have round ligament pain when not pregnant because it had flared up again). My pain was getting more and more constant and I realized it was dairy intolerance; once I stopped dairy, the pain began to subside. I have now been pain-free consistently for the last couple months, but it was about 6 months from the time I went dairy free until I stopped having any pain in my large intestine.

 

I'm a big proponent of just eliminating a suspected intolerance instead of doing any testing, but that's just me. It's a bit of a pain at first, but if you can make it past the first week, it gets a lot easier (at least in our experience). If eliminating gluten helps you feel better, then you have gained better health. If it doesn't, you have not lost anything except a month or two of gluten-containing products. If you are careful to not substitute too much, you won't notice much difference with your food bill either. (Trader Joe's has very good brown rice pasta - we do buy other GF foods that are more expensive than their gluten-containing counterparts, but we could do without if we needed. If push came to shove, we'd keep our GF oats, Udi's bread, and TJ's brown rice pasta.)