Remember my post a while ago about ds and his tummy pains??

[wy_kid_wrangler04]

Here is the thread incase you missed it. We have been going through testing. They tested for diabetes, parasites and did a total of 5 vials of blood. Not sure exactly what all they tested for but apparently everything turned out ok. We had another Dr app yesterday (we are going to a doctor an hour and a half away because our local drs are quacks :glare: Nearly everybody goes elsewhere) and basically the doctor asked if I thought he could be faking it. :001_huh: No, my son is not going to fake something like this for this long constantly without missing a beat. And, if for some reason he was he would not have lost a total of 16 lbs. He is 7 (just turned 7) and is 51' tall and weighs 51 lbs. The doctor thought the nurse messed up and re weighed and measured him. That is 7 lbs less than when we started going to the dr for this. I asked about food allergies and she said "we could test for that but it would be a waste of time. Food allergies found at 7 is like realizing your a millionaire at 50" :001_huh: What does THAT mean?? Where should we go from here? I am so done with this doctor. My son keeps losing weight. Not as fast as he was but he is still losing. He is ALWAYS hungry. Always. less than 30 minutes after eating he starts complaining of being hungry again.

 

I am lost. We are very rural. I don't want to go to just another dr that is even farther away and have the same issue. What do I do from here? His tummy aches are continuing. He does not have alot of energy (he has low tone so that may be part of the reason) he is so stinking pale all the time. I am really starting to worry.

 

 

I did call earlier and ask for a list of everything they tested him for and I am awaiting a call back.

 

I really would like advice on what to do to stop the weight loss until we figure out why he is losing. What can I do to get weight on him??

[Barbara H]

Good for you for advocating to find answers for your son's pain. Sorry for missing the back story. Did they test him for Celiac's or gluten intolerance?

 

You mentioned he has hypotonia, does he have a diagnosis that explains the hypotonia? If not, I'm wondering if you've at all explored metabolic problems including mitchondrial disease as a possibility.

[Jennifer-72]

You mentioned he has hypotonia, does he have a diagnosis that explains the hypotonia? If not, I'm wondering if you've at all explored metabolic problems including mitchondrial disease as a possibility.

 

 

I was wondering about that as well. I know you travel a lengthy distance for VT, any chance of a doctor there you can connect with on the same day as his VT?

[wy_kid_wrangler04]

No that was just kinda lumped in with his other special needs. I don't know what all they tested for. I am waiting for a call back. I will get a list today even if I have to fight them. I am so upset right now. I haven't done much. Now I feel horrible because I thought I could trust the dr we were going to but evidently not :glare:

[wy_kid_wrangler04]

I was wondering about that as well. I know you travel a lengthy distance for VT, any chance of a doctor there you can connect with on the same day as his VT?

 

 

I was actually looking into that. No specialists there. I would have to go to Denver for one. This is something I am more than willing to do though obviously. I do know a few people that go there regularly for specialists. I love rural living- usually. Its times like this I miss Michigan though. We had a 20 minute drive to the "medical mile" where you could find many specialists in anything you can think of. A VERY good children's hospital, everything.

[Barbara H]

Please don't be hard on yourself. It is the reality that often the first doctor doesn't get stuff like this. The fact that you've got some test results will make the next step easier as some possibilities may have been eliminated.

 

In addition to the lab results I would go ahead and get the forms to request his complete medical records. It is your legal right to have them and with a child with a complex medical history it is a really good idea to get a copy of it.

[rafiki]

.

[PeterPan]

Did you try going gluten-free with him and cutting out dairy like the other thread advised? Just wondering.

[wy_kid_wrangler04]

Did you try going gluten-free with him and cutting out dairy like the other thread advised? Just wondering.

 

 

 

We cut out dairy but did not go gluten free. That was based on the advise of this doctor that told us to not do anything drastic like that until we know for sure :glare: My fault. We are going to go trial gluten free- just gotta go grocery shopping this weekend. (1 1/2 hour drive)

[merry gardens]

... We have been going through testing. They tested for diabetes, parasites and did a total of 5 vials of blood. Not sure exactly what all they tested for but apparently everything turned out ok. We had another Dr app yesterday (we are going to a doctor an hour and a half away because our local drs are quacks :glare: Nearly everybody goes elsewhere) and basically the doctor asked if I thought he could be faking it. :001_huh: No, my son is not going to fake something like this for this long constantly without missing a beat. And, if for some reason he was he would not have lost a total of 16 lbs. He is 7 (just turned 7) and is 51' tall and weighs 51 lbs. The doctor thought the nurse messed up and re weighed and measured him. That is 7 lbs less than when we started going to the dr for this. I asked about food allergies and she said "we could test for that but it would be a waste of time. Food allergies found at 7 is like realizing your a millionaire at 50" :001_huh: What does THAT mean?? Where should we go from here? I am so done with this doctor. My son keeps losing weight. Not as fast as he was but he is still losing. He is ALWAYS hungry. Always. less than 30 minutes after eating he starts complaining of being hungry again.

 

I am lost. We are very rural. I don't want to go to just another dr that is even farther away and have the same issue. What do I do from here? His tummy aches are continuing. He does not have alot of energy (he has low tone so that may be part of the reason) he is so stinking pale all the time. I am really starting to worry.

 

 

I did call earlier and ask for a list of everything they tested him for and I am awaiting a call back.

 

I really would like advice on what to do to stop the weight loss until we figure out why he is losing. What can I do to get weight on him??

What was this doctor's specialty? Has your son seen a gastroenterologist? Since he's already lost a lot of weight, unless you clearly notice certain foods cause problems, I wouldn't make many diet changes until a gi doctor took a closer look at what's going on with him.

[wy_kid_wrangler04]

What was this doctor's specialty? Has your son seen a gastroenterologist? Since he's already lost a lot of weight, unless you clearly notice certain foods cause problems, I wouldn't make many diet changes until a gi doctor took a closer look at what's going on with him.

 

 

 

It was just a general practitioner. I have a few names of GI doctors to call tomorrow. So you think I should wait?? Could a diet change hurt him if it is not the problem??

[merry gardens]

It was just a general practitioner. I have a few names of GI doctors to call tomorrow. So you think I should wait?? Could a diet change hurt him if it is not the problem??

Depends on the diet change, but if I'm reading your posts correctly it looks like he's already lost over about 20% of his body weight, so I'd be careful not to restrict him on foods unless it's indicated. That's a significant amount of weight loss in a child! I was just reading through your other thread where you wrote how he drank a lot of milk but now it looks like he's been off dairy. If he cut out the milk and that didn't resolve the problem, then maybe milk wasn't the problem--and maybe cutting out the milk contributed to some of the weight loss.

 

He might have allergies or food intolerances, in which case it would be good to eliminate whatever food contributes or causes the problem. BUT he might have esophogeal reflux or gallbladder problems or who knows what else going. He may need treatment beyond dietary changes. Or he may need both. In any case, at this point I would make sure to see a gi doctor soon. A pediatric gi might be even butter, but if you can't find that in your neck of the woods, then simply a good gi doctor could help rule out what's going on with him.

 

Be sure to mention his weight loss in addition to the stomach pains---significant weight loss in a child that's already thin should get a gi doctor's attention.

Edited October 26, 2011 by merry gardens

[Ottakee]

I was actually looking into that. No specialists there. I would have to go to Denver for one. This is something I am more than willing to do though obviously. I do know a few people that go there regularly for specialists. I love rural living- usually. Its times like this I miss Michigan though. We had a 20 minute drive to the "medical mile" where you could find many specialists in anything you can think of. A VERY good children's hospital, everything.

 

Sure wish you could come back to the MEDICAL MILE here in Michigan. We are frequent flyers there. Dr. Chillag for mitochondrial issues and Dr. Cluney (?? of spelling) for gastro would be the way I would send you.

 

Can you get your insurance to approve a day or several at a Children's hospital? Then try to set up gastro and neurology (for the mito) stuff all on the same day.

[Ottakee]

Is this your kiddo with some behavioral/learning issues as well? If so, mito would certainly be the way I would be looking---as well as gastro.

[wy_kid_wrangler04]

Depends on the diet change, but if I'm reading your posts correctly it looks like he's already lost over about 20% of his body weight, so I'd be careful not to restrict him on foods unless it's indicated. That's a significant amount of weight loss in a child! I was just reading through your other thread where you wrote how he drank a lot of milk but now it looks like he's been off dairy. If he cut out the milk and that didn't resolve the problem, then maybe milk wasn't the problem--and maybe cutting out the milk contributed to some of the weight loss.

 

He might have allergies or food intolerances, in which case it would be good to eliminate whatever food contributes or causes the problem. BUT he might have esophogeal reflux or gallbladder problems or who knows what else going. He may need treatment beyond dietary changes. Or he may need both. In any case, at this point I would make sure to see a gi doctor soon. A pediatric gi might be even butter, but if you can't find that in your neck of the woods, then simply a good gi doctor could help rule out what's going on with him.

 

Be sure to mention his weight loss in addition to the stomach pains---significant weight loss in a child that's already thin should get a gi doctor's attention.

 

We have since added dairy back. We had him off of it for about 3 weeks and there was no improvement at all. I have not tried other eliminations but I see what you mean! That makes alot of sense.

 

Sure wish you could come back to the MEDICAL MILE here in Michigan. We are frequent flyers there. Dr. Chillag for mitochondrial issues and Dr. Cluney (?? of spelling) for gastro would be the way I would send you.

 

Can you get your insurance to approve a day or several at a Children's hospital? Then try to set up gastro and neurology (for the mito) stuff all on the same day.

 

I do too!! I really miss it :confused: Everything is just right there!!

 

Is this your kiddo with some behavioral/learning issues as well? If so, mito would certainly be the way I would be looking---as well as gastro.

 

 

Yes, same one.

[black_midori]

Many years ago, my nephew was having lots of stomach issues & losing weight drastically (he was around 12 at the time, I think, and got skeletal thin). They had dr after dr testing him for everything anyone could think of, and he just kept having problems with no solution in sight.

 

It took about 1.5 years to find a diagnosis of Crohn's disease (Inflammatory bowel) - once they finally did, the medication and specific diet worked wonders to restore him to health (although the steroids cause weight problems, which have finally settled down in the last couple of years).

 

Worth a short, anyhow!

 

I can't believe they wouldn't test for food allergies - that is the FIRST thing they did a test for when my 5yo was having stomach upset issues & we couldn't come up with a specific cause...

[Tiramisu]

I know your case isn't exactly like ours, but if it helps, we took our dd to a ped. GI doctor today for long-term nausea, but no weight loss and otherwise healthy. This is the plan she gave us:

 

1. cut all dairy for two weeks and record results (you've done this already); if it works, continue; if not, go to 2

 

2. try pepcid for 2 or 3 weeks (can't remember exactly); if it works, continue for 3 months, and see how it is afterward; if it doesn't work, go to 3

 

3. blood and stool tests; she doesn't want us to cut gluten before we reach this stage

 

4. endoscopy

 

I was very impressed by this doctor. She spent a hugely long time with us, covering all bases, especially noted family history in ways I didn't imagine would be important, even distant relations. She's affiliated with a major teaching hospital and children's hospital, and a very particular friend has used her for a dc with very serious issues, so I think we're in good hands. It will be a slow process, but I like how systematic she is, which is different from what I've heard about others' experiences with GI docs.

 

She was very insistent about doing one thing at a time so we can identify causes. She also told me to tell dh not to have the kids swim in creeks anymore. Then she brought up the possibility of abdominal migraines because of family history, but that would be a diagnosis which would come after ruling everything else.

 

Hope this helps a little. :grouphug:

[Misty]

Umm.. It sounds like the doctor you saw was the real "quack". You can develop a food allergy at any age.. Man, I hate ignorant doctors.

 

Your son needs a gluten-free trial ASAP! Let us know how it goes. Good luck!

[littleWMN]

Was he tested for Celiac?

 

I strongly agree with the gluten free trial (if you aren't going to do testing).

 

I have Celiac Disease and one of my dd's (who was adopted) has a gluten sensitivity.

 

The symptoms you describe are the exact symptoms of Celiac - over eating, malnutrition, tummy aches, etc.

 

Please try it! And be strict about it. Absolutely no gluten. We could tell a difference in just a few days with my daughter (and trust me, I didn't want to do it - I cried).

[wy_kid_wrangler04]

Many years ago, my nephew was having lots of stomach issues & losing weight drastically (he was around 12 at the time, I think, and got skeletal thin). They had dr after dr testing him for everything anyone could think of, and he just kept having problems with no solution in sight.

 

It took about 1.5 years to find a diagnosis of Crohn's disease (Inflammatory bowel) - once they finally did, the medication and specific diet worked wonders to restore him to health (although the steroids cause weight problems, which have finally settled down in the last couple of years).

 

Worth a short, anyhow!

 

I can't believe they wouldn't test for food allergies - that is the FIRST thing they did a test for when my 5yo was having stomach upset issues & we couldn't come up with a specific cause...

 

 

My brother has Crohn's disease :001_huh: I never even thought of that. Time to go look up signs/symptoms of that. All the bloodwork came back "perfect" according to the doctor :001_huh:

 

I know your case isn't exactly like ours, but if it helps, we took our dd to a ped. GI doctor today for long-term nausea, but no weight loss and otherwise healthy. This is the plan she gave us:

 

1. cut all dairy for two weeks and record results (you've done this already); if it works, continue; if not, go to 2

 

2. try pepcid for 2 or 3 weeks (can't remember exactly); if it works, continue for 3 months, and see how it is afterward; if it doesn't work, go to 3

 

3. blood and stool tests; she doesn't want us to cut gluten before we reach this stage

 

4. endoscopy

 

I was very impressed by this doctor. She spent a hugely long time with us, covering all bases, especially noted family history in ways I didn't imagine would be important, even distant relations. She's affiliated with a major teaching hospital and children's hospital, and a very particular friend has used her for a dc with very serious issues, so I think we're in good hands. It will be a slow process, but I like how systematic she is, which is different from what I've heard about others' experiences with GI docs.

 

She was very insistent about doing one thing at a time so we can identify causes. She also told me to tell dh not to have the kids swim in creeks anymore. Then she brought up the possibility of abdominal migraines because of family history, but that would be a diagnosis which would come after ruling everything else.

 

Hope this helps a little. :grouphug:

 

 

They (the doc we were seeing) called in a prescription for Zantac (I think it was, I have to go pic it up today. Just got the call yesterday) So we will try that while waiting for another app.

 

I called Denver and we have a 5 week wait. They told me to feed him high protein with ONLY whole grain carbs until he can get it. They said to wait on any changes and they said since eliminating dairy didn't have any affect to give him a carnation instant breakfast with every meal and with a protein snack 2x a day to help keep weight on until he can be seen. They put us at the top of the list to call incase of a cancellation but that will be hard because I will need minimum of 1 day notice because of how far away we are.

[Tiramisu]

My brother has Crohn's disease :001_huh: I never even thought of that. Time to go look up signs/symptoms of that. All the bloodwork came back "perfect" according to the doctor.

 

I don't think bloodwork will tell you if you're dealing with Crohn's. This kind of family history is exactly the type of thing our doctor was digging for. I asked about Crohn's and from what I remember it can turn up at your ds's age. We don't have Crohn's but other lovely autoimmune diseases and intestinal problems. Even though they weren't all in the direct line, our doc wanted to know about them.

[Misty]

My brother has Crohn's disease :001_huh: I never even thought of that. Time to go look up signs/symptoms of that. All the bloodwork came back "perfect" according to the doctor :001_huh:

 

Crohn's is STRONGLY linked to Celiac/gluten.

 

 

I called Denver and we have a 5 week wait. They told me to feed him high protein with ONLY whole grain carbs until he can get it. They said to wait on any changes and they said since eliminating dairy didn't have any affect to give him a carnation instant breakfast with every meal and with a protein snack 2x a day to help keep weight on until he can be seen. They put us at the top of the list to call incase of a cancellation but that will be hard because I will need minimum of 1 day notice because of how far away we are.

 

Whole grains can be any type of grain. I would go with Quinoa (say: KEEN WA). It's very high protein and gluten free. I boil whole grain Quinoa for 15 minutes, then add a can of tomato sauce and some cooked chicken bits. Add some healthy seasonings like tumeric and some flax seed for more healthy fats (omega 3's). I use Quinoa pasta when I make spaghetti or mac & cheese. You can also buy Quinoa flakes for a hot breakfast cereal. Add your favorite flavorings (cinnamon, etc.) and you're good.

 

Amaranth is another high protein grain to play with. When I bake gluten-free bread or dinner rolls, I always use a little Amaranth flour in place of some of the rice flour. Here is a recipe for Amaranth breadsticks:

 

Makes 14 breadsticks

 

1 cup amaranth flour

1/3 cup potato starch

3 Tbs. tapioca flour

3 Tbs. whole amaranth seeds

2 Tbs. sugar

1 0.25-oz. pkg. quick-rise dry yeast granules

1 tsp. xanthan gum

1/2 tsp. garlic powder

1/2 tsp. salt

1 tsp. olive oil

Chipotle chile powder for sprinkling

Kosher salt for sprinkling, optional

Directions

1. Spray baking sheet with cooking spray. Stir together amaranth flour, potato starch, tapioca flour, amaranth seeds, sugar, yeast, xanthan gum, garlic powder, and salt in bowl. Stir in oil and 3/4 cup plus 1 Tbs. warm (110°F) water. Beat dough with electric mixer on high speed 2 minutes, or until smooth.

2. Transfer dough to pastry bag fitted with 1/2-inch round tip (or large plastic bag with 1 corner snipped off). Pipe dough into 14 breadsticks. Cover with cloth, and let rise in warm spot 30 minutes, or until breadsticks have doubled in thickness.

3. Preheat oven to 400°F. Sprinkle breadsticks with chipotle chile powder and kosher salt, if using. Bake 20 minutes, or until dark golden brown all over and crisp on bottom. Serve immediately.

http://www.vegetariantimes.com/recipes/11235?printer=yes

Edited October 29, 2011 by Misty

[Misty]

BTW, you HAVE HAVE HAVE to watch this YouTube video which features Paul Nison and his journey to curing inflammatory bowel disease (Crohn's). This guy is FUNNY.. You definitely won't be bored watching.. There are 9 parts to the lecture..

Edited October 29, 2011 by Misty

[littleWMN]

Crohn's is STRONGLY linked to Celiac/gluten.

 

 

 

 

 

:iagree:

[Susan C.]

I'll throw this out there, disregard if it doesn't apply. Ds had terrible belly aches when he was little. I get a health magazine, and it had a small paragraph about sorbitol. It is in sugarless gum. Ds chewed several pieces a day. The paragraph said some people couldn't handle large amounts of sorbitol and after more than one piece of gum get belly aches. I limited gum to one piece a day and the belly aches disappeared. I have noticed sorbitol is in foods now, breakfast cereal being one.

[roanna]

I stumbled on your thread....

 

I cannot recommend enough the gluten issue. He does need to be eating gluten to get the correct results, so if you can wait, I would but it's hard.

 

I tried this with my husband who had awful issues, OCD, what appeared to be IBS, sleeping all day long etc...I couldn't wait for the test (because it won't change how you handle it) so I started it and it was a total life transformation for him. It may not be what your son has but gluten is a tough thing for many many bodies to process, along with dairy. Celiacs or even a gluten intolerance can flare up at any time. A person does not need to be born with the symptoms.

 

I just encourage to keep going, keep calling until you get the right help. Your instincts are right.

 

I hope you find the right help at your next stop.

Sincerely,

Roanna

[mcconnellboys]

We thought for years that my husband was experiencing difficulty with either some form of Crohn's or IBS. It finally turned out that he had something called a Meckle's diverticulum.

 

Apparently, sometimes during fetal development, some stomach tissue fails to differentiate from the intestinal tract and remains attached, forming a small pouch at some point off the intestines (sort of like an extra appendix).

 

Because this is stomach tissue, it produces stomach acids and those tend to get squirted out of the opening directly onto the intestinal tissue that is opposite the opening. Over time, this can produce lesions or other problems that will result in IBS or Crohn's - like symptoms....

 

It took years and a really good gastrointerologist to find this in him because it usually manifests when the person is in childhood and ends up getting removed at that time....

[greenvneck]

I'm going to chime in and say PLEASE check for celiac disease. He needs to be eating gluten for the testing, but if your appointment is a few weeks in the future it wouldn't hurt to take him off gluten for 4-6 days and see what happens. For my son, who had the same symptoms yours does, plus more, we saw a DRAMATIC improvement within three days. My SIL has Crohn's; she's had so many surgeries she has about five feet of intestines left, but she refuses to consider a gluten-free diet, one that has been shown to help.

 

Best of luck!

[Tiramisu]

I'm going to chime in and say PLEASE check for celiac disease. He needs to be eating gluten for the testing, but if your appointment is a few weeks in the future it wouldn't hurt to take him off gluten for 4-6 days and see what happens. For my son, who had the same symptoms yours does, plus more, we saw a DRAMATIC improvement within three days. My SIL has Crohn's; she's had so many surgeries she has about five feet of intestines left, but she refuses to consider a gluten-free diet, one that has been shown to help.

 

Best of luck!

 

I'll agree with all who said your ds needs to be on gluten for testing to be accurate, but I do know of a case of a child with celiac who responded IMMEDIATELY to removing gluten (with adults the effects seem to take longer to perceive). If you have weeks before your appointment, this route may be something to consider, though it would be hard, emotionally and physically, to reintroduce the gluten for testing if you saw a positive result and your ds's suffering was relieved.

 

In my case, when I gave up gluten myself before my GI visit, the doctor just said that if the gene test made celiac a possibilty, they'd want to do an endoscopy real soon, as in before the damage could heal. I'd already had two negative celiac panels so messing up the results of a blood tests wasn't as much an issue for me as it would be for others who had never been tested.

[Jill]

Blood tests for celiac disease are not definitive. In practice it is estimated that about 66% of patients with partial small intestine damage still test negative even though they actually have celiac disease. This is based on a modest study but it is worth knowing. So, unfortunately, if your son had the celiac blood panel run and was negative, it still doesn't absolutely rule out celiac.

http://www.ncbi.nlm.nih.gov/pubmed?term=Dig%20Dis%20Sci.%202004%20Apr%3B49%284%29%3A546-50

 

Also, here's a good recent article on eliminating certain foods to deal with IBS (including wheat and gluten-containing foods). It's basically the Specific Carb Diet, now becoming known as a low-Fodmaps diet. http://online.wsj.com/article/SB10001424052970204554204577023880581820726.html

 

I did temporary gluten-fee trials with my ds before he was diagnosed - 2 week gluten-free here, a week there. It became obvious that he was reacting to gluten just based on those trials. Someone with a less severe reaction might not be so obvious, I don't know for sure.

 

If you do still need to get either bloodwork or a small intestine biopsy done, he will still need to be eating gluten.

 

Tricky thing about testing, there are still reactions to gluten that Drs don't really have good tests for except elimination diets. We did the testing and biopsy in order to have an "official" diagnosis for things like schools, summer camps, any institutional setting where we might have to "prove" his need for a special diet. Other parents do not bother with the diagnosis and I can completely understand why: the testing does not cover all possible bad reactions to gluten, pure and simple. It ends up being your decision in the long run. I hope any of this helps in your search for solutions and decision making.

[Misty]

Blood tests for celiac disease are not definitive. In practice it is estimated that about 66% of patients with partial small intestine damage still test negative even though they actually have celiac disease. This is based on a modest study but it is worth knowing. So, unfortunately, if your son had the celiac blood panel run and was negative, it still doesn't absolutely rule out celiac.

 

I would 100% agree with this. I was never tested for Celiac (I obviously have it), but my mother, another obvious Celiac, tested negative on her Celiac test. She has been diagnosed with everything under the sun.. Irritable bowel, fibromyalgia, depression, anxiety, sleep disorder, degenerative disk disease, migraines, etc. etc..(also ADHD & learning disabled as a child). And now she is also diagnosed with dermatitis herpetiformis, which is a skin condition caused ONLY by having full blown Celiac disease! I finally got her to go gluten-free just this year despite a negative Celiac test and she could not believe how quickly everything went away.. No more headaches, muscle pain, irritable bowel, etc. etc. She is a new person!

 

Knowing what I know now, I don't even bother recommending Celiac testing. Just go straight to the elimination diet and see if things improve. If something makes you feel bad, don't eat it! I don't need a test to tell me not to eat gluten. It makes me sick, breaks my skin out in horrible rashes, gives me headaches, fatigue, muscle and joint pain.. No thank you!

 

 

Tricky thing about testing, there are still reactions to gluten that Drs don't really have good tests for except elimination diets. the [Celiac] testing does not cover all possible bad reactions to gluten, pure and simple. It ends up being your decision in the long run. I hope any of this helps in your search for solutions and decision making.

 

This is also true.. But you can do IgG testing, which usually shows a gluten sensitivity.. Even the smallest sensitivity. This is how I had my kids tested.. They tested off-the-charts high for gluten sensitivity.. I think at least one of them has full blown Celiac, if not two. One of them did test negative for Celiac, but her IgG was outrageous for gluten. One reason many people test negative on Celiac tests is because it looks for IgA antibodies to gluten and many Celiacs are actually IgA deficient!! You can do various types of gluten sensitivity testing (including IgG) through Great Plains Lab, Alletess, Biotek, or Enterolab.