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Member Since 01 Feb 2011
Offline Last Active Nov 14 2012 05:02 AM

Posts I've Made

In Topic: Can Somebody Help Me Figure Out Where To Go From Here?

12 November 2012 - 08:32 AM

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

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...

In Topic: Can Somebody Help Me Figure Out Where To Go From Here?

12 November 2012 - 06:56 AM

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.

In Topic: Can Somebody Help Me Figure Out Where To Go From Here?

12 November 2012 - 06:46 AM

My Dad had frequent blood transfusions for severe anemia and tanked hematocrits for 8 YEARS at Lahey Clinic outside of Boston. I am talking sometimes 2X a month. No problems at all.

Please do not let the need for a transfusion deter you because a few people had a "bad reaction"...this is a very non-specific description we hear on here all the time.

If your child needs one, then maybe you should do it. If you trust these doctors, they will monitor him closely, I am sure.

Just remember...none of us are doctors on c.com.... okay? we are just offering opinions.

Its not so much that a few people online have reported a bad reaction. Its that every description on medical sites lists a serious anaphalactic reaction to the infusion as about the only side effect. We'll have to talk about it with the doctor because I don't know how common it is but we were hoping we could accomplish what we needed without taking on that risk. Maybe we need to reconsider.

In Topic: Can Somebody Help Me Figure Out Where To Go From Here?

12 November 2012 - 06:40 AM

Have they done a bone marrow biopsy? The RDW # being up means there is greater variance in Red Cell Width, then is considered normal. This commonly occurs d/t bleeding; if there is no bleeding, then I would wonder about the production end of things.. How anemic is he? Also, has his stomach acid been measured? perhaps it isn't sufficient?

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.

In Topic: Can Somebody Help Me Figure Out Where To Go From Here?

11 November 2012 - 12:43 PM

Not sure why you are questioning the celiac disease theory, if the tTG changes when he is on the gluten free diet.

He could have additional food intolerances. He could be sensitive to cow dairy, all dairy, soy, even the gluten free oats. I had to quit using a certain brand of gluten free flours because of the oats issue about 10 months ago, but it made a huge difference for me, and that started bothering me in my eighth year avoiding gluten, which I didn't expect. The soy and dairy would be my top 2 suspects to try eliminating at this time.

If the issue is he doesn't like the iron supplement, then you need to deal with that, either by, trying a different one, cutting it back a little, giving it to him 2x a day at half the dose or experimenting at different times of day to see when it is more tolerated. Also, I use dedicated cast- iron pans to cook a lot of my food in, because every little bit of iron helps when you are fighting this situation. I clean them with water, a paper towel, and cider vinegar and baking soda - no soap. Blackstrap molasses is also a good source of iron, and you can put that into all sorts of different things, even homemade baked goods, smoothies, on jelly sandwiches w/ pb, etc. When I was battling this, I actually developed a taste for it. It does not replace an iron supplement, but it helps.

I am assuming he's getting a multivitamin with a B complex ? All these vitamins and minerals interact. If he is low in the B vitamins, THAT is a cause of not being able to absorb iron and can cause anemia.

Because nothing is better on a gluten free diet, and the docs (including the celiac specialist) have all said the TTG isn't enough to convince them that he definitely has celiac or that gluten is definitely the problem with his iron absorption.

We don't have any evidence that he is low in B vitamins. When tested his B's have all been normal, and the MCV being low would suggest B vitamin deficiency is not the problem. We did have him on a multi vit with B's though but it made it even harder to get enough iron into him so now we're just doing iron. The taste issue is a major problem and he can't yet swallow large pills.

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