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kmps

Villi Damage-could Severe Food Allergies Cause It Or Only Celiac?

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My question: I got tested in Feb. - EGD and blood work and blood was normal, EGD showed "beginning stage" of celiac (got 2 opinions on slide to confirm). At that time I was gluten free - mostly- for years since I felt so much better off of wheat.

Then I found out that I should have been ON gluten and started eating it. Now I went to a new Doc, well about 2 months ago. He said he thought it was irritable bowel until he had the second opinion on the biopsy done. Now he is "intreagued" by me and my craziness. :) Knowing that I am now on gluten for some time he just had me redo the blood work for celiac, which I did today and am DYING to call the lab right now and ask about!

Also after the EGD I hade gotten allergy tested for lots of foods and I was told that I have severe allergies to wheat, gluten, sugar (cane), potatoes, and so many other things that sometimes I cry because I can't eat anything in my house! My thought is: can the allergies cause a celiac type of damage? This Dr. tells me he doesn't really believe in all the food allergy stuff and I will be sending him all my records from that. I know I am allergic to sugar cane because now that I cut it out I feel so much more 'evened out'. Actually, my fingernails are growing for the first time without breaking in years and years. COuld it have been the sugar that caused the malabsorbtion/damage?? I do feel better overall since avoiding it.

ANything will help, thanks!

kmps

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My celiac support group had a gastro doctor from the area (she is trying to open a celiac center at Stony Brook Hospital) who said many things I did not agree with. She said that if a patient has flattened villi, but a negative blood test, then they can not be celiac. Many celiac's have had false negatives! She did say though, she feels if the blood work is negative, yet there is flattened villi, then it is from another cause, such as allergies! So, I guess some doctors do believe this.

You do the testing, and decide from there. If you know you feel much better gluten free, then you should be gluten free. I too, have many intolerance's: nightshades, all grains (soy, corn, rice, oats, and gluten), cruciferous veggies, red meat, dyes. etc. I have double DQ1 genes, and read recently that many with double DQ1 genes suffer from several intolerance's, plus neuropathy.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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My son has Celiac and several food allergies including wheat, egg whites, peanuts, corn, and soy. His GI told us that the villi damage can only be caused by Celiac (not food allergies). My son's food allergies cause rashes and hives to form on his esophagus and the GI told us only food allergies can cause that (not Celiac).


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data.

Above is from http://www.medscape.com/viewarticle/405488_2 [medscape is part of WebMD]

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This is interesting.....Based on Tim's post...Let's say...Your doctor tests blood for Celiac and it comes back NEG. But you get a biopsy anyway and it comes up POS. So your go on a gluten free diet.....maybe you have little improvement....maybe none at all. You find this forum and everyone says.....Give it time....Or you might need to cut out dairy or soy because a lot Celiacs cannot tolerate them either. So you cut the dairy and get better. Was it the gluten or the dairy? Or you cut out all three and get better. Was it the soy?

Which one caused the villi damage? NEG blood POS biopsy are you Celiac???

Or just intolerant to something else....The only way to know is a challenge. And that can be pretty scary.....


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Thanks everyone for your posts!

I did go on line after my last post to try and find some evidence for villi damage caused by allergy- and I did. I also found that there aren't many people in the web world that believe you can have sugar cane allergy. I was surprised by this and I was too tired to read more about why, but maybe my GI doc was meaning that....no allergies to sugar????

The info I found on a couple of sites mentions that celiac has 5 stages of villi damage while allergy has only 3.

Well, I do have so many allergies to foods (including celery of all things) and maybe all of them combined were causing my damage. ?? I have cut out mostly everything but I do "cheat" on most of them at times.

I have stopped taking every suppliment but one multi vit. in isotonic form - this even means no co enzyme B complex- that I have depended on forever and I must say that I haven't felt this good in a very long time. I think I may have mentioned previously that my fingernails are growing without breaking for the first time in 20 years or more!

What does this mean? Something is working. The only thing I haven't cut back on is wheat! And this is , of course, because I will be getting another EGD if my blood shows no gluten.

I still feel pains when I eat certain forms of wheat- like pasta. I still have constipation alternating with loose stools.

My previous biopsy states, "Due to the slight increase in intraepithelial lymphocyte minimal change or early phase of celiac sprue cannot be ruled out."

ANy opinions on this??

To throw one more thing in the mix, I also had a test show that I had no binificial flora and to much 'bad' bacteria.

Thank you so much,

kmps

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My previous biopsy states, "Due to the slight increase in intraepithelial lymphocyte minimal change or early phase of celiac sprue cannot be ruled out."

ANy opinions on this??

I also had a raised lymphocyte count on biopsy (count was 40) but it also said there was "no convincing villous atrophy" and my blood tests were negative so my docs have said I don't have coeliac. Gluten free diet has relieved my abdo pain so I'm assuming I have a gluten intolerance, even if it's not coeliac. I haven't found anyone who can explain whether the raised IEL count is due to the intolerance or whether it's caused by something else (or if it means I actually do have early coeliac).

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I could just give up gluten and let this all go, I guess.....

It will be to easy for me to cheat if I don't have a diagnosis, yes, I have no will power!

Plus! IF you are dx with celiac you can deduct on your taxes the cost difference of gluten free food and the shipping or gas/mileage to get it.

Hey, every bit helps and with all the special diets in my house we have a whopping food bill every month.

kmps

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