Question and Answers - Page 9

Q. Dear Roberta,

Just to check to see if gluten was bothering me because I have Sjogren's and had developed some peripheral neuropathy symptoms I went wheat and gluten free for about 7 days.

Then when I went to the rheumatolgist she ordered the blood tests for celiac. I ate wheat for two and a half days before the tests.

Was that enough time for those blood tests to show if I had celiac disease?

A. Different labs (and different doctors) recommend different periods of time that it is necessary to eat gluten prior to getting blood tests, but I have never heard of such a small time period as two and a half days.

You should probably ask your doctor if you should eat gluten for a longer period and get retested. Sjogren's is a possible consequence of celiac disease so it makes sense your rheumatologist decided that you should be tested.

Roberta

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Q. Dear Roberta,

Hello sorry to bother you only I don't seem to be able to get any answers.

I have been diagnosed with coeliac for 4 yrs now and have 3 young children who will only eat what I eat.
It is very hard to stick to the diet and I do try hard.

My question is that when I stick to the diet I always end up ill, lose weight and have the symptoms of coeliac. When I don't stick to the diet for a number of weeks, I put on lots of weight and feel better.

The hospital tell me they can't re-test me until I stick to it. My doctor says they can. Can I just have an allergy to something but not gluten?

Sorry for the essay,

Thank you.

A. Usually when doctors want to test your blood for the antibodies that indicate celiac disease (tTg) you are told to eat gluten, as the gluten is the reason these antibodies are produced in people with celiac. I'm not sure why you were told to "stick to the diet" so you can be retested, as someone following a gluten free diet should test negative.

As far as how you are feeling, some people with celiac disease who do not follow the diet feel fine and have no symptoms, and others are in agony. If you have definitively been diagnosed (the gold standard is a biopsy of the small intestine) with celiac disease you need to follow the gluten free diet.

Roberta

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Q. Dear Roberta,

I have recently been told that I have elevated cholesterol (170 LDL) and that oatmeal and exercise may help without having to take meds.

Meantime I have been eating a gluten free diet for about a month with positive results.

Is there such a thing as non-glutenous oatmeal that I could eat to help pull down my cholesterol?

A. There are several brands of certified gluten free oats you can try with your doctors ok (some celiacs react even to gluten free oats). You can get information on the following websites:

www.creamhillestates.com
www.glutenfreeoats.com

Roberta

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Q. Dear Roberta,

Thank you for your wonderful web site. You do a fabulous job for all of us with celiac disease. There aren't enough thank yous to you for your work.

I have gotten a horrible thrush infection in my mouth & found out celiac & candidiasis kinda go hand in hand or mouth to gut.

Have you ever heard of this before ?

I have an article that one of my friends sent me, the day before I got this infection. The article is DNC News: Celiac disease, Gluten Ataxia, Candidiasis from the Denver Naturopathic Clinic.

I already have some ataxia & swear I have gluten brain too. If you have not seen this article I hope you can go to the web site: www/denvernaturopathic.com/news/celiac.html

I would be interested in your thoughts on this……never had anything so awfully painful in my mouth, keeps one from eating, let me tell you.

A. I have not read any scientific studies that conclusively show a connection between celiac and candidiasis but that is not to say it is impossible that such a connection exists. If a gluten free diet helps your symptoms that's great.

I am very glad you are finding this website to be helpful and thank you for contacting us.

Roberta

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Q. Dear Roberta,

I had dry itchy hands and legs and my throat was getting dry and hard to swallow.

So I went to my doctor and he didn't know what it was. So he gave me lotion and other pills to take. I don't like pills so I didn't take them. The 3 lotions I took.

It didn't work so I went to a skin Doc. He gave me the same lotion and took a skin test.

That didn't work, so I went to an allergy Doctor who took another test and he found that I was allergic to wheat and 100 other foods.

What I would like to know if that's what you call 'celiac person'? The Doctor did not say anything about it .. he just said don't eat the ones you're allergic to.

What can I say or do for this problem?

A. You may have an allergy to wheat, a wheat intolerance, celiac disease, or none of the above. If you think you may have celiac disease and want to know if you should be on a gluten free diet you should ask your doctor to do a celiac panel (blood test).

If this is positive you MAY have celiac disease and your doctor will probably advise you to have an endoscopy with a biopsy to definitively determine if you have CD. In the United States it is the law that products made here that contain wheat must be labeled as such (foods).

As far as cosmetics, lotions, medications, etc, you may want to contact the manufacturer if the ingredients are not listed on the label.

Roberta

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Q. Dear Roberta,

I am confused, I tested positive for the Celiac gene (promethius celiac gene test..or something like that).
So my doctor whom suspected I was a celiac said okay you have it, go on the gluten free diet.

A friend advised me to take the antibody tests first. My antibody numbers were all within normal range(1-3).

Still another friend with Celiac said if the first gene test was positive I def. have it.

I had an gastro-endoscopic exam not long ago, therefore I do not want to undergo that again now.
At the time they were looking for something else.

Any advice? I have started the gluten free diet and can tell my digestion process is better, but it is a hard diet for me as I am a bread lover.

I am willing to get healthy though at all costs. I appreciate any advice you can give me.

A. Not everyone who has the celiac genes has celiac disease. Knowing you have the genes only means you could have celiac disease. The antibody blood tests are usually used to screen and if they are positive doctors usually recommend a biopsy (during an endoscopy) as the "gold standard" of diagnosis as the antibody tests can be falsely positive.

What to do? It is up to you, but if you do not want to undergo another endoscopy at this point and you feel better on the gluten free diet it sounds like the best course of action to keep feeling well might be to continue on it, as difficult as that is.

Roberta

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Q. Dear Roberta,

My 5 yr. old daughter was diagnosed with Celiac 4 months ago (thru blood tests & endoscopy).

Ever since she was 2, she has always had a rash on her face. After the Celiac Diagnosis and going GF it seemed to improve.

But it seems when she is around other children (like now at camp) she comes home almost every day with this rash.

I have consulted a great dermatologist and it is not "DH" per say, although he & I think it is due to gluten contamination somehow.

Have you heard of children getting rashes from being touched by others with gluten on their hands?
The camp is having all children wash their hands before & after all snacks & lunch. But my daughter continues to have the rash. I am thinking it is because they all hug (and maybe their faces have traces of gluten from sandwiches, cookies, crackers, etc.)……

I am at my witt's end, as I cannot get the rash to stop — only happens around other children (not when she is at home with me).

Lastly, I am home schooling her as I cannot control what happens outside our home. Have you heard of any other children with rashes (doesn't blister like DH) but is all red pimples and welts.

THANKS! Any info. would be helpful!

A. Has the rash been biopsied to determine if it is DH or not? I had a rash that came and went and my dermatologist biopsied it and found out it was not DH but was something called lichen planus (which sounds like a tree disease, doesn't it?). I'm not sure it is associated with celiac disease but I have a feeling it is genetic as my sister has it (but she also has celiac disease as well).

I wouldn't blame you if you hesitated to get the rash biopsied because it will result in a small scar and you wouldn't want that on her face. If she has the rash anywhere else on her body maybe they could biopsy that.

It will be difficult to keep her from contacting other children — maybe you could give the camp counselors some baby wipes and ask them to wipe her face after any contact they observe.

Roberta

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