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Would You Scope?

renee28

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renee28 Rookie
renee28
Posted

Hi there,

Our four year old son has had three celiac blood tests. Two were normal and one had high ttg iga levels. We just got the results back from Enterolab and his fecal Anti-gliadin IgA is 44 and fecal Anti tissue Transglutaminase IgA is 25 (less than 10 being normal). His fecal fat is 1731 units with less than 300 being normal.

Would you scope? I feel like we want a proper diagnosis, but it also seems that the scopes are not that reliable?? If the scope is negative, then what?? Tell people/his school he has to be off of gluten because???

He complains of stomach pain, has bloating, had a large back up of stool last summer, has some joint pain, bouts of constipation (although none lately)...

Thanks,

Nicole

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mushroom Proficient
mushroom
Posted

Hi there,

Our four year old son has had three celiac blood tests. Two were normal and one had high ttg iga levels. We just got the results back from Enterolab and his fecal Anti-gliadin IgA is 44 and fecal Anti tissue Transglutaminase IgA is 25 (less than 10 being normal). His fecal fat is 1731 units with less than 300 being normal.

Would you scope? I feel like we want a proper diagnosis, but it also seems that the scopes are not that reliable?? If the scope is negative, then what?? Tell people/his school he has to be off of gluten because???

He complains of stomach pain, has bloating, had a large back up of stool last summer, has some joint pain, bouts of constipation (although none lately)...

Thanks,

Nicole

The hearsay is that all celiac testing in infants under five is not particularly reliable. Was his positive blood test the last one or a previous one? From his Enterolab results we can see that he is definitely not processing his food well, which would seem to indicate some intestinal damage. I think with that high a score I might go ahead with the scope since the diagnosis is more important for children than adults because of the school issues you mention. Get a diagnosis if you can, but if you can't, just tell the school he has to be off gluten because it makes him sick.

Mac55 Apprentice
Mac55
Posted

My son is 4 also and if I had to do it all over again I would definitely have done the scope before going gluten-free. He was supposed to have a scope done for his constant reflux, possible allergies. Then, the office never got in touch with me, I couldn't get a hold of the right office to schedule it. I got VERY sick and was diagnosed with Celiac. I took both the boys off gluten and my 4 year old literally turned around in regards to his health. It was amazing. This all happened within a month.

Now, in order to check we have to put him back on gluten. We may or may not try that after school is over. We go back to his GI in a couple of weeks. I'd definitely do all the testing you can at this point, then try him gluten-free. Discuss it with his GI as well. His old GI was very well aware of the limitations of testing on young kids. We haven't discussed it with his new one. Hoping you get your answers and your son feels better soon!

Wolicki Enthusiast
Wolicki
Posted

I declined a scope for my son. Here's a question to ask yourself: If the scope is negative, will he be gluten free anyway?

Tests look positive. For me, that would be enough. I was sick for 10 yrs before I was diagnosed. My son had frequent vomiting/constipation/diarrhea/headaches. His blood tests were positive, so we went gluten free. I wanted to save him the years of pain and frustration.

renee28 Rookie
renee28
Posted
  • Author

I declined a scope for my son. Here's a question to ask yourself: If the scope is negative, will he be gluten free anyway?

Tests look positive. For me, that would be enough. I was sick for 10 yrs before I was diagnosed. My son had frequent vomiting/constipation/diarrhea/headaches. His blood tests were positive, so we went gluten free. I wanted to save him the years of pain and frustration.

I feel like we need the proper diagnosis, but am worried that if the scope is negative, is it really negative? or perhaps the sample they took just did not show the atrophy. or maybe he is gluten sensitive vs. celiac. or perhaps something else??

mushroom Proficient
mushroom
Posted

I feel like we need the proper diagnosis, but am worried that if the scope is negative, is it really negative? or perhaps the sample they took just did not show the atrophy. or maybe he is gluten sensitive vs. celiac. or perhaps something else??

If the scope is negative, despite what the doctor may tell you, that does not mean that you should continue to feed him gluten. A gluten free diet sounds in order whichever way the testing works out. For every diagnosed celiac there are at least three gluten intolerants/ssensitives who should also avoid gluten. Many doctors are not quite up with this play, but Dr. Rodney Ford certainly is, and is a world acknowledged pediatric expert in celiac.

As I stated before, testing is unreliable in the under-five age group, there are also false negatives even in adults, some people are actually celiac but never test positive, some believe that gluten intolerants eventually will become celiacs.

A negative test is not a license to feed gluten to your child if he clearly reacts to it.

katerzz Newbie
katerzz
Posted

I'm so glad we had a scope and biopsy for my almost 2 year old. He had ulcers and all sorts of stuff from celiacs. I was also told by 3 different doctors that the only way to be sure one has celiac over something else is a positive biopsy. They can also find other causes for problems that are much like celiac symptoms. If you or your doctor have any doubts, get the scope and see whats going on.

The scope is pretty safe and it takes like 15 minutes. My son was fine after they did it and was back to himself within 2 hours. It was a great test for a peace of mind, or in this case a proper diagnoses. I would opt to do it, I wish we would have done it sooner.

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  • 2 weeks later...
Mizzo Enthusiast
Mizzo
Posted

Hi,

We just had our 6yr old scoped. Maintaining a gluten enriched diet before the tests helps to insure a more accurate diagnosis. Also, what if something else is going on?

They were scoping our girl and found a infection site and tested the biopsy for H.Pylori.

Here's the thing, the scope will show more than what you have now. It is very safe, we as parents suffer more anguish that they do.

By the way she tested neg for the infection and positive for Celiac. So it was worth our while. Otherwise I would have continued to feed her high fiber foods and massive quantities of laxatives as I was doing per Dr's orders for severe constipation. She was already suffering daily stomach pains in the nurses office everyday (we thought for constipation) Our Dr's instructions were to give her more WHOLE GRAINs and veggies. Finally we insisted on seeing a GI and got tested.

If you are insured, the test can't hurt to have done. Even if negative you can stop eating Gluten and see the response, No harm done. As stated gluten intolerence does necessarily show up in test.

Good luck

renee28 Rookie
renee28
Posted
  • Author

Thanks for the response - we have an endoscopy and unfortunately a colonoscopy sceduled in two weeks. Not looking forward to it, poor guy, but it may give us some answers. Thanks

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      By trents · Posted

      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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      Eating gluten before blood test

      By Dema · Posted

      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      alright thank your help! 🤍
    • Scott Adams
      Eating gluten before blood test

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      By Scott Adams · Posted

      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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