Don't Know What To Think

[Aleshia]

ok, so I've had lots of symptoms my whole life. none of them really were gastric though. in the last 3-4 years I have lost 2 inches of height, I have bone loss shown in my hips (by bone scan) brain fog, memory loss, tingling in hands and feet etc etc etc. too many symptoms to list (if anyone is interested they can find one of my other posts cause I think I listed them once) anyway, I was told many things by many doctors and then I found a good GI doctor who wanted to do an endoscopy, he told me I would only need to eat gluten for 5 days because I had only been off of it for 1 1/2 months (I ate it for 7 days just to be sure) after the endoscopy (when I was still kinda out of it) he told me that he found what he thought was Eosinophilic Esophagitis. he said he was pretty sure about it but would have to confirm with the biopsies. he also told me that he saw what could be celiac disease but wasn't sure if he was just thinking that because it had been suggested or if it was really there so said he would have to wait until the results of the biopsies came back. anyway, I thought he was gonna call me with the results but he wrote instead... this is what it says:

"Dear Aleshia,

This letter is to follow up on the upper endoscopy and blood work performed on 6/2/08. The biopsies fro mthe top and bottom of the esophagus were interpreted by the pathologist as being normal; specifically, there was no evidence of a condition called eosinophilic esophagitis. The biopsies from the duodenum (first part of the small intestine) showed a mild nonspecific increase in inflammatory cells without obvious evidence of celiac sprue.

The blood work showed normal levels of immunoglobulins (antibodies) and no evidence of celiac sprue.

Let me know if you have any questions or concerns.

Sincerely,

Young S. Oh, M.D.

Gastroenterology

and he sent a copy to my naturopath...

anyway so is he still thinking its celiac but not obvious? he told me at my appt. before the endoscopy that since I did good on the gluten-free diet and it helped me that I could have some other type of gluten intolerance... I would have thought that he would want to do a follow up appt. to talk about trying to figure out why my pills get stuck... since HE is the one who told me that that wasn't normal... I was just thinking that everyone must get big pills stuck... I mean the pills I take are HUGE.

any suggestions? I plan on staying on the gluten-free diet since I feel better on it. and am having the kids blood taken soon (I want to wait until after my daughter's school ends for the summer so I don't have to drag whining glutened kids to and from school every day. the ped. told me that since its been only a couple of months since they've been gluten free that it should be fine to do the blood test without giving them gluten... I think i should at least give them gluten first to be sure... how long do you guys think would be necessary for this??? I was thinking 4 days... but maybe I need to do it longer?

[lizard00]

Ok... so remember that this forum is all about opinions.

It is MY opinion that your nonspecific inflammation in your biopsy is probably related the your 7 day consumption of gluten. If you have celiac disease, your body responds immediately to a gluten-free diet. Once the offensive gluten is removed, your body immediately works at healing itself. That's why people usually find immediate relief of something when they begin the gluten-free diet. But keep in mind that it is possible to have non celiac gluten intolerance. Which can make you just as sick. Gluten is an inflammatory substance, and I have heard of many cases where a doctor recommended a patient go gluten-free for various health reasons.

And also, if your children are gluten-free, the chances of anything showing up positive for celiac on a blood test at this point are pretty slim. Sorry that your ped gave you incorrect info. Blood tests are often inaccurate in children, then throw in the factor that they are already gluten-free.

I'm not sure if this helps. I am glad to hear that you are going to stay gluten-free despite your test results.

Take care

[nora-n]

Aleshia, this Pill-stuck business happened to me too. I was not that bad before, but after the gluten challenge I had this too. Did not get better until I changed toothpaste to a natural salt toothpaste. I ran out and tried another natureal toothpaste (kingfisher) but I did not tolerate it, esophagus problems came back, had to go to different shop and get the natural salt toothpaste.

I then had a biopsy for eosinophilic esophagus and it turned out negative.

In my opinion they only pick up the worst cases and you should have been back on gluten for a couple of months, not just some days.

Here in this country they want positive biopsies (and we get a lot of money if we have positive biopsies) but you do not really need them over there I think.

If you want to do a gene test, those without DQ2 or8 often do not get the cclassic villi damage they demand...gluten damage is not just celiac but it manifests in more ways.

Dr. Lewey has written about the meaning of increased intraepithelial leucocytes, and some places see them as evidence of celiac together with symptoms. Other places demand Marsh 3.

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nora

[Aleshia]

And also, if your children are gluten-free, the chances of anything showing up positive for celiac on a blood test at this point are pretty slim. Sorry that your ped gave you incorrect info. Blood tests are often inaccurate in children, then throw in the factor that they are already gluten-free.

how long should I have the kids eating gluten if I wanted the test to be more accurate??

[lizard00]

The general accepted time frame is around 3 months. It partly depends on how long you have been gluten-free. Once you remove gluten, your body stops making antibodies for it. They can linger for a little while, but generally not very long. And that's good for your body, but bad for testing. And when you start eating it again, the antibody production must be measurable. And that takes a while.

[tom]

The general accepted time frame is around 3 months.

I don't know that there IS a generally accepted amount of time (or amount of gluten?) for this.

Stanford's Head of G.I. Dept told me a half of a slice of bread for 1 month.