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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

60 Years Old And Self-diagnosed
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12 posts in this topic

I keep searching the Web for someone like me.....I have changed my diet after MUCH research on the Web and TOO many doctors to count....no one with any type of diagnosis that helped....just kept throwing anti-depressants at me and a weak diagnosis of CFIDS. So long story short, I started a gluten-free diet about 3 weeks ago and although in some regards feel better, still lots of exhaustion, feverish, and stomach pain, but no major symptoms like before, i.e., stomach bloating, foul gas, diarrhea, etc. My question is this, HOW LONG till this stage passes? Is there anyone out there like me who believes or knows they found out in the latter stages? I know I have suffered for years and that my father definitely suffered exactly as I do. He eventually died of colon cancer. My fear is that I am too far gone to recover. Are there things I can do to help the healing process? I am skin and bones.

thank you. help. :0

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You are not too far gone unless you're six feet under! :P

Welcome,

I don't know what CFIDS is, could you fill me in?

The gluten free diet take a while to master as it can be quite complex. It also will take some time to heal, providing that gluten is your issue.

Can you expand on your symptoms and your current meds?

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Yes me! I have just turned 60, read my signature line for my 47 years of mis-diagnosis...................and I am a confirmed Coeliac as of last September via endoscopy and positive antibodies

I am beginning to feel wonderful! I have been ruthless and cut out even glucose syrup from wheat (deemed "safe " by Coeliac Australia............2 parts per million gluten there fore "no detectable gluten") and any skin care/bath/cosmetics products containing gluten

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welcome, I am 61 & have been gluten-free for 3 1/2 years. I tested thru enterolab.com. I have two DQ1 genes, as do most of the people in my family.

It takes awhile to heal, you will I am sure make adjustments to your diet as you learn more about food. I might suggest that you also go dairy & soy free at the same time. I always say this, but it is true that it does help you heal faster, especially at our ages.

Keep reading books & learning, check into lectins read "Eat right for your blood type", read "Dangerous Grains" and the newest fave book of mine is "Good Calories Bad Calories"...

learn about the nightshade foods, many of us do not tolerate potatoes.

I gave up corn syrup two years ago, best thing I ever did for my health, upped my meat consumption & I am mostly grain free - but you will find what works best for you, just be aware that it is a journey & things will change. Keep an open mind - wow I guess that is preaching to the choir, since at your age you figured this out on your own, some people cannot do that... well a lot of people it seems, & it seems that a lot of the younger ones do not believe that the unmm, junk is the mildest adjective that I can use to describe the food that they eat, could be harming them.

I think you will be feeling much better soon.

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I was cllose to death by the time I was diagnosed, if I can heal so can you. It does take a while and it does take ferreting out all possible gluten sources but you can recover. I have not come back 100% neurologically but otherwise after almost 6 years on the diet I am pretty much better than I had been since childhood.

The thing that helped me heal the fastest was going with naturally gluten free, non or minimally processed foods. I also added a sublingual B12 vitamin to help with my neuro issues.

Be sure to read as much as you can here. Be a fanatic about gluten at least at first until you know how sensitive you are. There are some things like grain derived alcohols and vinagers that some will tolerate but others won't so wait to test those until you have been gluten free for a while and then you will be able to tell if they are safe for you also.

Welcome, you have found a great resource. Ask any question you need to, no matter how silly or gross it may seem.

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It does take time. Unfortunately, there are no definite timetables. It depends on the individual. I haven't heard anyone who has healed completely in three weeks, though, so hang in there. (Maybe the folks who heal in three weeks don't hang out on this board :D )

I assume you have a good list of ingredients that are safe, unsafe or need to be investigated further? And you know about how to avoid cross-contamination at home?

Dairy and soy seem to be problems for many. If your progress seems to stop, try eliminating them. Dairy seems to be the most common, second intolerance on this board. If you don't want to make any changes in your diet yet, you might start up a food/symptom diary and see if you feel worse after eating particular foods. Unfortunately, people may react to any number of other foods; there is no one size fits all.

A good multivitamin/mineral supplement would be useful. If you have malabsorption issues, you aren't getting enough nutrients out of what you are eating, and won't until you heal. I've read that magnesium is a particular need among those new to the diet.

I also recommend a good probiotic to help your gut develop a healthy set of bacteria.

Some people go through withdrawal from gluten, also. It may be that your symptoms are simply that and will fade on their own.

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Just wanted to add my experience. My symptoms were not that strong, but i did a journal entry about 3 weeks in to it, i posted a journal entry saying my digestion was much better, but i was hoping it would help my mood and energy level. A month after that, I posted saying my mood and energy were better too. I did have to get more careful about the gluten (no malt flavoring in cereal, for example). I've seen people say that an accidental glutening can leave them anxious and depressed for up to 2 weeks, too, and I am still feeling bad after a glutening last weekend. So you can definitely expect 2 steps forward and 1 step back.

good luck

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As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.

6-7 years ago I might have had an issue that went away and was replaced by something else, thinking I had solved that previous problem in reality I had just replaced it with something else.

As I cut down I went backwards through that...my current issues went away and old ones cropped up. I personally saw this as progress since issues within your body are about balance. I was getting more in balance and it just took time.

I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

So I reached a certain chemical balance to make a certain reaction happen. You'll probably see similar things, you went all the way up the ladder now you need to come back down it but that doesn't neccessarily mean your not getting better.

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As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.. . .I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

Oh, I'm so glad you posted that! I was really baffled, because a weird bump showed up on my nipple, and i'd been plagued by these when i nursing 2 years ago but hadnt seemed them since, and was just kinda nervous to see it coming back, and then a rash between my breasts which hadnt bothered me in years, at least not in the winter, showed up . ..so this could be part of my progress? I hadnt even thought to connect them!

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I don't know what CFIDS is, could you fill me in?

Since nobody else answered this particular inquiry, I guess I will.... :D

CFIDS = Chronic Fatigue Immune Deficiency Syndrome (aka: Chronic Fatigue Syndrome)

Cheers!

-Geoff.

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I too was initially diagnosed with Chronic Fatigue Syndrome... it seems like a lot of us are... I'm curious if it is a complete misdiagnosis or do a lot of people with Celiac also have CFIDS?

Susan

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I also am self-diagnosed after a negative test, but I have in just two (2) weeks been almost completely bloat free. I was so bad that they would ask me when I was due. I hope that the gluten free diet will be the answer for me after going on three years of "we don't know". I only had one doctor (an anesthesiologist in the family) who mentioned Celiac sprue, but I didn't have clue what that was. Actually, I still am not exactly sure. What is this test you can order?

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