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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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nicolebeth

Low Total Igg--What Does This Mean?

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Hello, I posted a few months ago, and have a new question.

My son (almost five) who has low total IgA (45.6, range is 66-120) had his total IgG also tested by the GI. As it turns out, his total IgG is around 460 (reference 600-1000). They want him to see a pediatric immunologist before going forward with an endoscopy (they may well still do one, but the immunologist might be looking for things as well).

Is low total IgG common with celiac? (I didn't take the call; my husband did, so I might not get to speak to the GI myself for a while.)

To recap a bit, my son is small for his age (and small for our family) and has had eczema and GI issues. He's had antibiotics 9x (at least).

Thank you!

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Hello, I posted a few months ago, and have a new question.

My son (almost five) who has low total IgA (45.6, range is 66-120) had his total IgG also tested by the GI. As it turns out, his total IgG is around 460 (reference 600-1000). They want him to see a pediatric immunologist before going forward with an endoscopy (they may well still do one, but the immunologist might be looking for things as well).

Is low total IgG common with celiac? (I didn't take the call; my husband did, so I might not get to speak to the GI myself for a while.)

To recap a bit, my son is small for his age (and small for our family) and has had eczema and GI issues. He's had antibiotics 9x (at least).

Thank you!

See a pedi immunologist. Low IgG means something's going on w/the immune system & is most often related to Primary Immune Deficiency Disorders. My son has the exact same thing- low IgA & low IgG but normal subsets (if those haven't been tested, get them done b/c they give a better picture of what's going on). He also has low neutrophils which is another component of the immune system. So far, Evan's undergone celiac testing 2 different times & last Sept had an EGD w/biopsy done- all is negative. The immunologist diagnosed him with: Selective IgA Deficiency & Transient Hypogammaglobulinemia of Infancy because he makes antibodies to vaccines (they did a prevnar vaccine challenge). His main symptom that started this ball rolling was chronic diarrhea (now ongoing for over a year), irritibility, waking during the night SCREAMING. Turns out, in addition to his immune system issues, he also has moderate reflux & is on 30mg of prevacid. Right now, Evan's immune system issues are being treated w/ 125mg omnicef daily- unless he gets an ear infection (he's had 8 in the past year), then he's put on Septra 2x daily for 10 days.

It's difficult but if you can successfully coordinate care between the pedi GI & immunologist, you'll hopefully start to find answers. Also, I would recommend doing a LOT of research! If you want more immune system information- esp on Primary Immune Difficiency Disorders (or PIDD), I suggest visiting www.primaryimmune.org. There is a TON of relevent information.

Feel free to as me any questions! Hope that helps!

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See a pedi immunologist. Low IgG means something's going on w/the immune system & is most often related to Primary Immune Deficiency Disorders. My son has the exact same thing- low IgA & low IgG but normal subsets (if those haven't been tested, get them done b/c they give a better picture of what's going on). He also has low neutrophils which is another component of the immune system. So far, Evan's undergone celiac testing 2 different times & last Sept had an EGD w/biopsy done- all is negative. The immunologist diagnosed him with: Selective IgA Deficiency & Transient Hypogammaglobulinemia of Infancy because he makes antibodies to vaccines (they did a prevnar vaccine challenge). His main symptom that started this ball rolling was chronic diarrhea (now ongoing for over a year), irritibility, waking during the night SCREAMING. Turns out, in addition to his immune system issues, he also has moderate reflux & is on 30mg of prevacid. Right now, Evan's immune system issues are being treated w/ 125mg omnicef daily- unless he gets an ear infection (he's had 8 in the past year), then he's put on Septra 2x daily for 10 days.

It's difficult but if you can successfully coordinate care between the pedi GI & immunologist, you'll hopefully start to find answers. Also, I would recommend doing a LOT of research! If you want more immune system information- esp on Primary Immune Difficiency Disorders (or PIDD), I suggest visiting www.primaryimmune.org. There is a TON of relevent information.

Feel free to as me any questions! Hope that helps!

Thank you so much for your response. The Children's GI doc definitely wants him to see an immunologist before doing the endoscopy, and she's even finding us one over there, so they should be well coordinated. Since our son is almost 5, we're guessing that the vaccine thing was ok (though, he reacted badly to all that he's had so far--did you find that?) There is celiac in the family but not low IgA or low IgG (that we know of), but I know it doesn't always work that way. It sounds like the GI still believes there is reason we might find celiac, but didn't exactly explain whether there's a connection with low IgG and celiac (on that helpful site you suggested, it doesn't look like total IgG and celiac have a connection).

I hope your son is feeling better now! What a relief it must have been to know what was going on, finally. Do they think your son will grow out of it? I saw that it can be the case with many kids.

We will take your words to heart and research before we see the immunologist (I've already been looking up quite a bit since reading your post yesterday).

Thank you again!

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Hi

I have been all over the place trying to find some one with who has similar symptoms too my 2 year old. When he was about 9months old he stated to get alot of ear infections, so his doctor kept putting him on antibiotics he then started having chronic diarrhea and would throw up at least once a day normally in the middle of the night while he was sleeping but everyone and a while it would happen during the day. We were sent to an ENT who wanted to put tubes in but i was to crazy about jumping right to surgery so she suggested going to an asthma and allergist who ran all sorts of test and came back with he has some kind of Immune Deficiency and has now sent us to an Immunologist. His IgG levels are around 450. At this point i am begining to get worn out from going to doctor to doctor when each new one says we are going to figure this out and then they can't and we get passed off to someone else who can't see him for months. The throwing up and diarrhea have stopped but at this point he is waking up screaming in the middle of the night and he is always drained and tired. He has good days and bad days, playing with his friends makes his so over tired. reading your posts sounded kind of like my son so i guess pretty much i was going to see if either one of you had gotten an answer as to what your children had

Thanks

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If the kids that have low IGA and IGG are continueing to have issues with D and other possible celiac related issues I would strongly advise going ahead and giving the diet a good strict try. Those low values could very well cause a false negative in testing for celiac, IMHO, and the diet won't hurt them. It may not help all their issues but if it relieves the tummy issues and helps with growth it certainly won't hurt.

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My son had an endoscopy and sigmoidoscopy in June (at Children's in Boston, where they have a lot of experience doing these). He was 100% negative--there was nothing to indicate anything wrong with him. At the follow-up appointment they said that he wasn't THAT small, and if his growth dropped, to see an endocrinologist in a few years (i.e., he could be finding his curve at a small end). They also offered us testing for intolerances (as carbohydrate malabsorption was seen in his stool). We declined since we already know that we're lactose intolerant. Also, he's not been that ill to take him off all fructose. Since it's summer, he no longer has eczema either. The immunologist has ordered further immunological panels for him. We're sort of turned off by the idea of more tests since he's pretty much fine...and since he went through all the other tests. (This doctor didn't seem too concerned, just wanted to close the loop.)

One remaining doubt I have with the diagnosis of no celiac: my son nursed for a long time...would that have provided gut protection to make an endo 100% clear? I didn't really go into that with the GI, though they did know that he nursed for some time.

(I think about this still because I have food issues, and do feel better when I don't eat gluten, but I feel like a fake, especially since I've had negative blood work (though, granted, I was gluten-free at the time). I've been eating all gluten, all the time lately, and have been tempted to get the blood work repeated before I go off of gluten once again.)

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(I think about this still because I have food issues, and do feel better when I don't eat gluten, but I feel like a fake, especially since I've had negative blood work (though, granted, I was gluten-free at the time). I've been eating all gluten, all the time lately, and have been tempted to get the blood work repeated before I go off of gluten once again.)

How has your body reacted to going back on gluten? Usually if we have a gluten issue, go gluten free and then add it back in our body will react badly to the challenge.

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How has your body reacted to going back on gluten? Usually if we have a gluten issue, go gluten free and then add it back in our body will react badly to the challenge.

I've felt better overall without gluten, but don't typically feel worse when I go back to eating it. I don't know if that makes sense. I don't have certain painful intestinal/GI symptoms when I'm not eating gluten (but those symptoms don't happen all the time anyway and can be caused by corn, bananas, etc.). I have more energy for exercise without gluten. With it, I've felt my legs turn to rubber while running, and I have to stop immediately or I feel like I'll fall over. Nutritionists have no answer, and say to eat more, eat more protein, eat more carbs, etc. I am less bloated without gluten. I just had a baby in May, and ate gluten throughout...and didn't have issues, though I gained a lot with all three pregnancies and never have energy to go for walks, etc. I have had panic symptoms that seem to come only when I've had gluten. I used to think it was from coffee, but I don't really drink that much. The combination of a bagel and coffee (and little other food) can do it (but not all of the time).

I was diagnosed with IBS in 1994 after a barium enema/lower GI. I am lactose intolerant. I have been hypothyroid since my first child was born in 2002. I am somewhat sugar-sensitive, which made me wonder if it wasn't gluten, but just things high in simple carbs.

I looked into gluten being an issue after talking to the acupuncturist--my stomach was bad in winter 2008, I think. I don't know if I had a low-level bug for a few weeks, whether it was the occasional dairy I was then eating, or if it was gluten. Anyway, I went off of gluten around the same time I came down with the regular flu. (Easier then, in a way, since nothing sounds good but soup.)

I thought I could stop eating it for however long a food challenge should be, then have it again after that time period and see if there's a difference. (My stomach hasn't been great for about two weeks now, not as bad as that winter, but not great either.)

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