19 replies to this topic

[October3]

I think the other piece I didn't mention that has us questioning is that the GI doc who we worked with up until last year told us he does not have celiac, and that we should not eliminate gluten from his diet. He proposed supplementing with iron long-term and no further attempts to find the cause. We weren't happy with that plan and so we decided to take my son to the celiac disease center for a second opinion and even they were not able to say to us "yes, gluten is definitely the problem." So it feels like we're already operating on a hunch. It is so very frustrating not to ever have a sign that we're on the right track.

[GFinDC]

Hi October3,

I think the ttg numbers dropping on the gluten-free diet means something. If gluten was not causing a reaction the ttg shouldn't change right? How do his doctors explain that change?

I assume when you say he was scoped that you mean he had an endoscopy, not a colonscopy. Having both would be a good idea. But, an edndoscopy can only reach about 5 feet of the small intestine, and there are close to 22 feet in adults. So lots of unexplored territory there. Camera/capsule methods can see the whole intestine and take pictures along the way. But they can't get biopsy samples. So just because they saw little damage in the endoscopy does not mean there is not more damage further along.

I agree with the suggestions to remove dairy and soy from his diet. Both of them can cause damage to the gut. And recovery from soy and dairy can take several weeks or more, so don't give up on it right away. Another fairly common food intolerance is nightsahdes, potatoes, tomatoes, peppers and eggplant. Some of reacto corn or eggs too. Leaky gut can cause intolerances to any food out there.

Most chocolate has soy and dairy in it, so you might try carob on him instead. You can get carob powder in health food stores. I know dairy makes me bleed, so it can do that.

The article linked below could be the reason he isn't testing positive on celiac disease tests.

Non celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

[frieze]

No, we've not done a bone marrow biopsy or had his stomach acid measured, I don't think. How do they check the stomach acid?

He is not terribly anemic. I think the lowest he has gotten has been a hemoglobin in the high10's. Its enough that we can tell he isn't feeling well - his behavior gets terrible, lots of tantrums, etc and so we have always had him checked and started the supplements before it dropped lower than that. On supplements his hemoglobin is pretty much normal but his iron stores have a really hard time getting back to normal. We give him 45mg of iron twice a day if we can get him to take it and when we recently dropped to once a day the numbers started to drop again.

Hmm, if his H+H are that high, they may not be interested in doing a biopsy (an invasive,potentially painful procedure) stomach acid would be tested by "dropping" an NG tube for a specimen....probably are other ways. Do you make sure to NOT give the iron within 2 hours of any calcium rich food/supplement? perhaps including Vitamin C with the iron would help? not the buffered kind!

[October3]

Hi October3,

I think the ttg numbers dropping on the gluten-free diet means something. If gluten was not causing a reaction the ttg shouldn't change right? How do his doctors explain that change?

I assume when you say he was scoped that you mean he had an endoscopy, not a colonscopy. Having both would be a good idea. But, an edndoscopy can only reach about 5 feet of the small intestine, and there are close to 22 feet in adults. So lots of unexplored territory there. Camera/capsule methods can see the whole intestine and take pictures along the way. But they can't get biopsy samples. So just because they saw little damage in the endoscopy does not mean there is not more damage further along.

I agree with the suggestions to remove dairy and soy from his diet. Both of them can cause damage to the gut. And recovery from soy and dairy can take several weeks or more, so don't give up on it right away. Another fairly common food intolerance is nightsahdes, potatoes, tomatoes, peppers and eggplant. Some of reacto corn or eggs too. Leaky gut can cause intolerances to any food out there.

Most chocolate has soy and dairy in it, so you might try carob on him instead. You can get carob powder in health food stores. I know dairy makes me bleed, so it can do that.

The article linked below could be the reason he isn't testing positive on celiac disease tests.

Non celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

No, he had an endoscopy and colonoscopy together. They didn't want to have to go back later and scope again if nothing showed up on the endoscopy.

Thanks for the link. Going to read it now...

[mommida]

Can you go over the test results again and check for eosinphil counts? (This should also be on the pathology report of the biopsies taken.) It is more of a "new hard to diagnose" catagory of eosinophilic gastro. disorder. There is now a proven link between Celiac and eosinophilic esophagitus. This could explain some improvement on a gluten free diet diet , but not a full recovery. In fact the symptoms in a Celiac were nearly identical to a gluten reaction, but it gets bloody. (depending on where the eosinophils are causing damage where the blood is coming from. (my daughter was vomitting blood with eosinophilic esophagitus and for some reason constipation issues too.)

That being said.

It seems to me that there are at least some type of "food reaction" that could be identified through an elimination diet. My experience here was to remove all top 8 allergens and peas (staying gluten free too). Once there was a major improvement in health (clear scope) a small amount of suspect food was added back in the purest form for 3 days. (since I was looking for an eosinphil reaction there was at least a 12 day reaction to look for and wait out)

Definately go back to the specialist. Go over all the previous test results and make a list of what was ruled out for diagnoses. Monitor all other possible symptoms. A probiotic could be very helpful.

Was he tested for ITP ((hopefully I don't slaughter the spelling) Idiopathic Thrombosis Purpura))? Pernicious anemia? I do believe both conditions would cause red blood cell irregularity on test results and anemia.

Please keep us up to date on your progress. Thoughts and prayers for your family and cyber ((HUGS))!