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kelbarben

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kelbarben Newbie
kelbarben
Posted

Hi. I'm new here. We found out Monday that our 11 year old son's blood work showed some positive results to being allergic to gluten. We have been going to the doctor for over a year with a line of issues including his lack of gaining weight, skin problems, and stomach issues to name a few. We are going to a specialist GI doctor in another town in a couple weeks for possible more testing, colonoscopy and endoscopy. So to start, the doctor said clear his diet of all gluten products to see if there is any improvement. I have so many questions. Hopefully someone can help me with a few at first:

1. how long before we will see some improvement? He has stomach pains all the time, is tired all the time, and cranky. He has missed so much school already and I'm just stressed!

2. Are the blood tests pretty accurate?

3. Does he really need scoped??

4. What do you do about the moodiness and depression? Does this improve with getting gluten out?

Thanks for your help. I will be studying up a lot on here.

kelbarben

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LDJofDenver Apprentice
LDJofDenver
Posted

Hi, and welcome.

From everything I've read (on this forum and elsewhere), there are often false positives when testing children. So just the act that the blood work showed some positive indication of a gluten issue tells me you may already have your answer (I don't think there are false positives!). They may just be ordering the endoscopy as confirmation of what is suspected. It (endoscopy) is still considered the "gold standard" of celiac diagnosis, although some in the medical community are beginning to change their minds on this (since, yes, there can also be false negatives on a biopsy).

Usually they don't have you eliminate gluten until the testing is done. If it's only in a couple weeks, you may want to wait? Can you ask the doctor if this (endoscopy) is just for confirmation of celiac disease?

Like I said, you may already have your diagnosis.

If his issue is gluten then, yes, improvements to probably all of that. Although I saw many improvements with my own fatigue and grumpiness, I think children really show the most dramatic improvements on all that. Some parents on this and other forums say the changes are night and day - and all for the good.

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LDJofDenver Apprentice
LDJofDenver
Posted

ooops, typo: So just the act

s/b

So just the FACT

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kelbarben Newbie
kelbarben
  • Author
Posted

Thank you for the info. I will call the children's hospital and check with those doing the biopsy to see about his diet. I just feel like I can't go another week with him being sick like this! After reading your post, I thought of another question--

From what I have read, it looks like this is hereditary but my husband and I don't know anyone in our families that have this. Is it possible for him to be the first?

Thanks.

kelbarben

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LDJofDenver Apprentice
LDJofDenver
Posted

It is a genetic disease, so it had to come from one side of the family or the other.

He could just be the first to show such severe symptoms. And you can have many folks that are asymptomatic, and diagnosed "accidentally." And often family members can show the gene and some gluten intolerance, but are not celiac (at least, not yet).

The site below can probably answer a lot of your questions, and will no doubt help you form a few more questions for your doctor:

Open Original Shared Link (University of Chicago Celiac Disease Center)

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missy'smom Collaborator
missy'smom
Posted

LDJ, correct me if I'm wrong but I think you meant to say in your first post that there are often false negatives, not false positives. It has always been my understanding that there are often false negatives with the blood test so it could still be celiac disease if the blood test is negative. But a positive is a positive, definitely celiac disease.

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LDJofDenver Apprentice
LDJofDenver
Posted

Yes, indeed, got it backwards, but that is what I meant!

But I hopefully did manage to convey that having an indicator of the gluten problem (allergy as it was phrased) is probably a pretty good diagnosis, in itself.

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ang1e0251 Contributor
ang1e0251
Posted

If you take him off gluten before the endoscopy, the results are suspect. If you don't want to scope him but need a definative dx ask your dr if he will dx on the blood work and dietary response. If you don't care about a dx only how your son feels, then go for the diet and forget the rest.

I'm not trying to tell you one method is better than the other. That's a very personal decision to make and there is no wrong choice. The only caution is don't take him off gluten if you plan to have further testing.

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      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      Joint swelling when ill even on gluten-free diet

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