Mild Case Of Celiac Disease

[GF ME]

I had my endocopy on 7/12. It was confirmed that I had a mild case of celiac/sprue and that I should stick to the gluten free diet. The only thing that I really changed is not eating pasta, bread and the obvious gluten-free products. I watch how I prepare stuff, but I enjoy going out. But does anyone know how strick I really have to be with this if I only have a mild case?

I still use the same shampoo, toothpaste, lotion, etc. Am I not healing at all if I don't follow this diet to a 'T'?

This is very confusing to me. I feel better and I am not getting glutened hardly at all.

Can anyone shed some light on this or should I see a dietician or a support group?

Thanks!

[swittenauer]

I've never heard of a mild case. I thought you either had it or didn't have it. I would recommend being 100% gluten free.

[CarlaB]

It's really not accurate for them to have told you "mild case" of celiac. You either have it or you don't! Mild can only refer to the level of damage you have. If it's only a mild level of damage, you are very lucky that it didn't take very long and a lot more damage to discover the celiac! You need to be entirely gluten-free because the mild damage can get worse and certainly won't get better if you still consume gluten.

Welcome to the board.

[beaglemania]

I'm like you I only have a mild case, my only serious effect I've gotten from Celiac Disease is osteoporosis. I've stuck with all my regular toothpastes and shampoos and I feel fine. The best gluten-free pasta is BiAglut go to glutensolutions.com I love it!! Tastes like regular pasta. No way to reheat gluten-free pasta's though. For bagels, english muffins, all bread products go to glutino.com. Awesome poppy seed and plain bagels and breads!!

Don't eat anything with gluten though still. If you go out to eat beware of sauces and croutons on salads and dedicated fryers for french fries.

[2kids4me]

I also have never heard ofa mild case of celiac - its kinda like being "a little pregnant".

My kid's GI doc refered to the changes on my daughters biopsy as mild to moderate but followed that by ...conclusive evidence of celiac disease. The biopsy had patchy areas... My son's biopys was severe with subtotal villous atrophy on all biopsies taken from the duodenum. Symptom wise - mydaughter had more serious outward signs and my son had mild stomach aches and joint pain (+ bed wetting that stopped after going gluten-free).

You cannot rely on outward symptoms - celiac is celiac just like pregnant is pregnant.

[Guest southgoingzax]

All true. Some people may have a different level of sensitivity - i.e. a tiny bit of gluten makes them sick, while other people can even drink a beer without noticing any ill effects. That being said, just because you don't NOTICE any symptoms doesn't mean no harm is done. The very best thing for your health is to be completely gluten-free - otherwise, your "mild" celiac could turn into a laundry list of associated illnesses and conditions (chronic joint pain, headaches, brain fog, numb or weak legs and arms, thyroid issues, diabetes, cancer, depression, vitamin deficiencies, etc., etc).

It is your choice, but maybe you should do a little more research into the matter before making a decision, good luck,

zax

[GF ME]

Thanks for all your responses. That makes so much more sense. I will look into getting a dietician. Does anyone know of any in Southern New Jersey/Philadelphia area?

[BBadgero]

I agree with everyone - have it or not. But the true test is not getting tagged. One question - how often does it take some of you to notice you "totally ate gluten"? Sometimes for me it is within the hour - but could be in my head sometimes too? A little help from the "veterans"?

Also, anyone have a forum yet on here to address specific foods? I have done some research on certain medicines (Tylenol, Allegra, and Tagament) that have been confirmed gluten-free. If there is a forum on here where that can be shared - I can't find it yet....

[Lisa]

Delfi Forums has a Gluten Free Product list which is very helpful in the beginning.

Nini on this site has a beginners list of just about everything. PM her and she will send it on.

Lisa

[2kids4me]

I agree with everyone - have it or not. But the true test is not getting tagged. One question - how often does it take some of you to notice you "totally ate gluten"? Sometimes for me it is within the hour - but could be in my head sometimes too? A little help from the "veterans"?

I can only answer for my daughter - she will get a migraine/stoamch ache wuthin 1 -2 hrs after exposure. Once it was inhaled gluten (playing in an empty grain bin with cousins on a farm) - she got a headache within an hour and felt crappy (fatigue, headcahe, tummy ache) for the next 24 hours

[maggee]

Thanks for all your responses. That makes so much more sense. I will look into getting a dietician. Does anyone know of any in Southern New Jersey/Philadelphia area?

Be sure your dietician / nutritionist has experience with celiac. When my son was diagnosed we were referred to a nutritionist. When we met with her she had to go "dig-up" a list of allowable foods on a gluten free diet. Top of the list was a burger king burger - "just remove the bun"

By the end of our visit she admitted I already knew more than she did about the diet (and that was only about half of what I should have known at the time).

sorry I don't have a recommendation in your area but I used books as a starting point (Danna Korn - "Wheat Free Worry Free"). And I check out the info here for updates on gluten-free products.

Good Luck.

[JenAnderson]

I was diagnosed with a "mild case" and I can tell you honestly that you have to follow the diet. I tried not to at first and it almost killed me. I still use the toothpaste and shampoos that I usually would have, but I have to be conscious of everything that I injest. I have had severe bone pain, and brain fog, and vitamin deficiencies just having a few crumbs from the butter tub. I don't have DH, and all the other things. All I can tell you is that you need to follow the diet. There will be so much of a difference.

[debmidge]

All true. Some people may have a different level of sensitivity - i.e. a tiny bit of gluten makes them sick, while other people can even drink a beer without noticing any ill effects. That being said, just because you don't NOTICE any symptoms doesn't mean no harm is done. The very best thing for your health is to be completely gluten-free - otherwise, your "mild" celiac could turn into a laundry list of associated illnesses and conditions (chronic joint pain, headaches, brain fog, numb or weak legs and arms, thyroid issues, diabetes, cancer, depression, vitamin deficiencies, etc., etc).

It is your choice, but maybe you should do a little more research into the matter before making a decision, good luck,

zax

I second this. Did Dr. tell you it's a mild case or is that how you view it as you get little or no known symptoms?

I'd worry about the silent neurological damage, the connection between your eating gluten and arthritis, and the higher chance of cancer. All silent damage of course will not show up until years later and you'll then wish you were 100% gluten-free.

The people on this board offer a wealth of experience and information and I trust their opinions and instincts on Celiac.

[loraleena]

There is no such thing as a mild case. You have it or you don't. Even if you don't feel sick, the tiniest amounts can do hidden damage. You need to be compeletely gluten free.