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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is Gluten Causing Me Permanent Damage?
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7 posts in this topic

Hello and thank you for taking the time to read my post.

A few months ago, I adopted what I call a gluten light lifestyle. I do not eat breads, cookies, pasta, etc. However, I still use Campbell’s Cream of Mushroom soup when making casseroles as an example of gluten light.

My Physician’s Assistant recommended I try a gluten free diet to see if it would alleviate any of the joint pain in my hands. My joint pain has defied diagnosis but it is currently under control with medication and a gluten light lifestyle.

I have experienced good results with removing most of my gluten from my diet. My hands feel practically normal and my digestive system has improved remarkably. What convinced me beyond a doubt that I am gluten sensitive at the least, was an incident at Thanksgiving. I chose to have 2-3 bites of stuffing. My hands ached within a couple of hours and stayed that way for 4 days. So, it’s gluten light for me without little tastes along the way.

I have not been tested for anything regarding gluten or Celiac. My personal experiences are enough for me to keep with the new lifestyle. However, I was told by a lady with Celiac that I could be doing permanent damage to myself by not going completely gluten free. Is this true? Could I be doing myself harm without even knowing it?

Thank you in advance for your thoughts on the matter.

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If you have Celiac, you would be damaging yourself.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

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Hello and thank you for taking the time to read my post.

A few months ago, I adopted what I call a gluten light lifestyle. I do not eat breads, cookies, pasta, etc. However, I still use Campbell’s Cream of Mushroom soup when making casseroles as an example of gluten light.

My Physician’s Assistant recommended I try a gluten free diet to see if it would alleviate any of the joint pain in my hands. My joint pain has defied diagnosis but it is currently under control with medication and a gluten light lifestyle.

I have experienced good results with removing most of my gluten from my diet. My hands feel practically normal and my digestive system has improved remarkably. What convinced me beyond a doubt that I am gluten sensitive at the least, was an incident at Thanksgiving. I chose to have 2-3 bites of stuffing. My hands ached within a couple of hours and stayed that way for 4 days. So, it’s gluten light for me without little tastes along the way.

I have not been tested for anything regarding gluten or Celiac. My personal experiences are enough for me to keep with the new lifestyle. However, I was told by a lady with Celiac that I could be doing permanent damage to myself by not going completely gluten free. Is this true? Could I be doing myself harm without even knowing it?

Thank you in advance for your thoughts on the matter.

What Kareng said. If you do have celiac, you are damaging yourself.

You spoke of your joint pain, but did not elaborate your digestive symptoms. What digestive symptoms have you seen improve on a gluten-light diet?

If you wanted to get tested for an "official" diagnosis, you'd have to go back to eating a little more gluten than you are. If you need the support of a diagnosis to convince you, it might be worth it. If you can go completely gluten free fore several weeks to 3 months, you might have enough of an answer in seeing how terrific you feel when completely off gluten!

There are some great substitutes for the canned soups we use in casseroles! We've done a pretty good "Campbell's Green Bean Casserole" using one of those in a box...I think it is by Pacific Brand...mushroom soup that's pretty good. They also make a condenses cream of chicken.

Or, it just doesn't take much time to make a white sauce...you can make your own "canned soup substitute" using either corn starch or "glutenous" rice flour (NOT to be confused with "white rice flour").

For canned cream of chicken, make extra-thick white sauce with chicken broth. For canned mushroom substitute, make extra-thick white sauce with some chopped, fresh mushrooms thrown in. I saute my mushrooms a little in the butter I use for the sauce, it's darn good according to my family!

You might also get your thyroid checked. I used to have a lot of aches and pains in my hands and shoulders. Between getting rid of gluten and getting my thyroid squared away, the pain is gone.

Welcome to the forum!

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First of all, I'd like to thank both of you for responding to my inquiry. Looks like a long road ahead but at least I have people to help me along the way :)

As for my digestive symptoms, that's complicated. I am 47 years old and was born with a heart murmur. Because of that, I have had to take antibiotics twice a year before dental cleanings. In addition to that, when I got sick I would be put on antibiotics. I have had bowel issues my whole life. It took me years to figure out it was most likely due to the antibiotics. Eventually, I went to a specialist who told me I had IBS and prescribed tranquilizers and sedatives. I didn’t want to live that way. So, I did more research and discovered acidophilus. It helped. But, it didn’t fix everything. My first objective when entering a store would be to know where the bathroom was just in case an emergency came up and one often did. My current doctor prescribed a home remedy of several supplements including acidophilus that I blend together and take daily. It works rather well. But, since I’ve reduced gluten, I no longer need to take that either. Also, I no longer need to premed for dental cleanings. The American Heart Association changed its stance on the practice. So, I think my gut is on the road to recovery. At least I’m feeling better.

I thought I was doing pretty well about cutting out gluten. I figured the small amounts in the cream of mushroom wouldn’t be that big a deal. But, it sounds like that isn’t the case. After reading so much about testing being less than accurate, I’m not sure I want to go through the pain of eating gluten again to get an iffy result.

I’ve also read that toothpaste and make up can have gluten in them too. This is getting a bit overwhelming for me. I’ll need to take this one step at a time.

I’ll check out your links and advice for food substitutions. I’ll eliminate more and more as I go along. I’m certain the website and its contributors will prove to be valuable sources.

I believe my thyroid has already been cleared. But, I've had so many tests regarding my joint pain I get confused. I'll go back and double check that it's fine.

Thanks Again!

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I don't think testing is very inaccurate. I have seen several sites saying they are very accurate. It's just whether you get the right tests, the right advice to be eating gluten, a GI who will biopsy more than one place, etc that make it inaccurate.

http://www.massgeneral.org/children/services/celiac-disease/celiac-disease-faq.aspx

"How accurate are the celiac blood tests?

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present."

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Going gluten free can be overwhelming, but if you're already "gluten light" and feeling so much better, then it would be worth it to go fully gluten free.

As much as it might be useful to get tested, if pain and problems return just from a few bites of really gluteny things, then it might not be the best thing for your health. However, that might mean that the best thing for you is to be completely gluten free.

If you do have Celiac, or even if you are gluten intolerant/sensitive, then you shouldn't be eating any gluten at all. Even tiny amounts will do damage, even if its slow and you don't feel it.

It's not that much of a stretch to cut it out completely. There are lots of substitutes out there now.

So be brave and decide what's best for you.

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I appreciate everyone's input and suggestions. My better health is quite a movtivator. So, gluten free here I come :)

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