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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.

Your Experiences About What To Try After gluten-free?
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11 posts in this topic

I'm so glad I just found this site. I went gluten-free three months ago, had been off dairy for at least six months before that.

Following birth of my son, I had rotavirus, mastitis, antibiotics, exhaustion, sleep-deprivation and a lot of emotional stress -- I think it triggered latent celiac disease (had trouble with conception and IUGR in pregnancy, so it was probably there before).

For the last two years I had chronic diarrhea, joint pain, gas/bloating, anxiety, depression, constant fatigue. It all came on at the same time.

Last fall, I actually had a dream in which I was told I had celiac disease (at the time I didn't know anything about it) -- crazy, no?

So, about a week or two after I went gluten-free, ALL my symptoms disappeared. But then about three weeks later they started coming back -- and steadily, not as if I'd just slipped and gotten a little gluten by mistake. I went on Elaine Gottshall's "selective carbo diet" which meant cutting out all other starches and refined sugar. THAT worked for about a week -- symptoms gone again -- and then the symptoms returned.

Still on the selective carbo diet (no starches, gluten, refined sugar, plus for me no dairy) my symptoms are back in full force -- diarrhea, gas, bloating, joint pain, the whole thing.

I feel lost about what to do next. I was so delighted about my immediate response to the gluten-free diet and now it seems like nothing works. Is it just a matter of time or is there something else going on? Bacterial overgrowth? Candida? What?

I think my only daily vice left is two cups of black tea with a tablespoon of soy milk in it and....dark chocolate. I've had a very occasional glass of red wine, but haven't noticed any correlation. Is it maybe the soy and chocolate? Is it corn and I haven't gotten it all out because it's so hard to find?

By the way, I had nutritional deficiencies and bone density tests done last month at the doc and despite two years of solid diarrhea and undigested food, I don't have any deficiencies that show up.

I would be most grateful for any ideas and just to hear other people's experiences in recovering.

[side note: I started on an SSRI for the anxiety and depression and it seemed like it didn't work because my body wasn't absorbing much of anything. When my guts got better briefly, I switched to another SSRI, effexor, which seems to be working at a low dose now, so the anxiety/depression is better but not any of the gut symptoms. I'm interested in how these neuro-transmitters which we have more of in our gut than our brain might be connected to gut illnesses like celiac disease.]

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Let's see....you have already mentioned some of the possibilities :)

Considering you have "only" been on the diet three months (and it seems like forever!), you still may very well have not healed fully. It can take months to fully recover.

Do you have a good doctor? It might be worth having a routine check up, and then ask to be tested/referred for other things, if you are interested in pursuing other reasons. Sometimes you could have something, and taking out every single food won't help. On the other hand, you could "only" have another intolerance.

Here are some things that I would consider discussing with your doctor, that people on this board have dealt with/been tested for (and there are many others, I'll just try and get out as many as possible)

having your Celiac blood panel re-tested (to see if gluten damage is still a problem) and/or biopsy to look for damage

food allergy/intolerance testing

thryoid

bacterial overgrowth (done through a breath test)

Crohn's/UC/MC (colonoscopy)

ulcer (h. pylori)

parasites

Lyme Disease (western blot blood test)

mononucleosis

candida (yeast overgrowth in intestines)

autoimmune disorders (ANA/sedrate/CRP)

eosinophillic disorders-related to food allergies

That is my best shot....I hope that you find some answers and your health improves. Best of luck to you.

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I have had a lot of improvement in all those areas recently and the things that changed were:

I started making/drinking coconut milk kefir (hugely probiotic effect)

I started supplementing vit D3 (oily only, dry doesn't work) at 4,000 iu

I started supplementing folic acid AND B12

I don't know if they all helped or only some helped but my chronic D. is gone, my brain is functioning great (horray!), and my arthritis, even in my KNEEES (which have always hurt) is vastly better.

If you don't want to supplement the D3 then be sure to get 20 minutes of sun exposure a day on your body (covered up doesn't help!) at a low latitude. I can't be out in the sun much, so I take the supplements.

I'm suspecting I had a D3 deficiency at that was making my joints really bad. But I think the kefir is what stablized my gut and I believe the B vitamins are helping the brain/nerves.

I also follow a diet that is similar to SCD (Paleo) and I try not to eat many starches or sugars but concentrate on meat/fish nuts veggies and some fruit.

I wish you luck!

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Laura had excellent suggestions.

I followed a similar path as you. I went gluten-free and felt the best I had felt in years. Then I felt bad again. Then I removed casein ... no improvement. I also avoided the obvious corn and soy. Still no better. I have to say though, I am sensitive to gluten and get much worse if I get even a trace of contamination, which explains why I felt better at first on the diet!

I have Lyme Disease. My lyme doc tests every person who comes to him for celiac because celiac and Lyme have almost a complete overlap of symptoms. There is a list of symptoms on www.canlyme.com. www.lymenet.com and www.igenex.com are two other good sites to check out.

Since your post was asking about our experiences, I thought I'd share ... the first thing I thought of with you was candida. The thing is, candida doesn't happen for no reason at all ... generally there's a problems somewhere causing it. I have always felt significantly better on an anti-candida diet myself.

You could try removing the soy and see if there's any change ... who knows, maybe it's that simple! I hope so!!

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Oh man, thanks SO much you all! It's so helpful to hear from other folks!

Please keep passing along your experiences as you're able -- it's a huge gift!

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Hi Cate, it can be soy. After I went gluten-free soy was still making me sick. (Be sure to check food lables too because lots of dark chocolate have soy lecithin as ingrediet.) Investigate the elimination diet and see if other food intolerances may be your problem. I also had a bad time with intestinal candida in the past and I believe getting rid of that is what paved the way to dealing with other issues better.

I have also been taking home made coconut kefir (after seeing Nancy's thread from a while ago :) ) and I must agree that it does wonders overall. I also feel more awake and a general well-being that is priceless! I think it is the natural oils of the coconut and the live and well beasties in there that is so good.

Good luck.

Flowergirl

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Laura had a great list of things to look into.

You're definately not alone. I went gluten-free.....then added casein free....then soy....then eggs....then corn....the lists goes on and on...but I'll stop here. ;)

Corn-free was hard by the way....OMG...corn is in everything...makes gluten free seem like a walk in the park. :blink:

Lets just say that at this point the foods I eat can be counted on one hand and I'm definately not symptom free....but I'm ALOT better than I was a year ago and I have a good understanding of whats going on with my body.

I've gone through quite an extensive amount of testing over 4 years (and ALOT of research) but for me its come down to Lyme disease, Candida, Mold/fungal issues (possible aspergillus infection), and heavy metal toxicity.

Right now we're just sorting through these issues to find out what the *primary* issue is in my case....although I do need to address all of these things in order to get well.

I have leaky gut and obviously have major food intolerance. I've been gluten-free for almost 2 years. I definately have big time gluten intolerance w/out having Celiac. For me its a direct consequence of having leaky gut....which was a direct consequence of having candida overgrowth....which was a direct consequence of one or all of the other issues I have.

What Carla said is accurate....Candida doesnt become a problem on its own. There has to be an underlying cause which is weakening the immune system.

Your situation doesnt have to be quite so complicated....it could be another food intolerance but if you've got alot of food intolerance...its generally due to having leaky gut.

Also....in my first 3 years of traditional testing nothing ever showed up in my bloodwork, my CTscans, my MRI, my endoscopy, colonoscopy, x-rays and on and on. Everything was normal....except that I was pretty much bed-ridden, severe depression, pain everywhere, sensitive to everything and was only 94 lbs. due to 25 lb. weight loss.

I had malabsorption for sure. My Enterolab malabsorption score came back very high....almost severe...yet all the bloodwork showed no deficiencies...no problems whatsoever. I felt I was dying and they couldnt find a single thing wrong. Obviously the tests dont always tell the whole story.

All of my problems stem from issues which are intracellular...meaning a person can be very seriously ill from any one of these issues....yet bloodtests and other tests designed to identify specific disease will all be perfectly normal.

So thats my experience....it was only horrible when I had no clue as to what was going on. The past year has been great...in terms of getting answers and learning new things about my health...its been a great year.

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You are certainly not alone. I went gluten-free and felt great for about 2 months and then I didn't feel so good anymore. I went to a holistic doctor and she did a 3 day stool test. It was expensive but totally worth it. I had a bad bacteria, an amoeba and almost no good bacteria, along with candida overgrowth. I was put on 2 antibiotics and then Threelac helped get the candida under control. I started taking digestive enzymes and probiotics and felt much better. I also kept a food diary and realized that I'm extremely sensitive to gluten (very small cc amounts), and that I can't have nighshades and several other foods.

I would recommend trying to find a doctor to help you. I really don't trust doctors since I went to tons of them and my mother was the one that figured out that I have celiac, but sometimes they are helpful. I don't think I could have figured all that out on my own and I think I would have gotten very frustrated. Someone who is an MD and also deals with alternative medicine is good because if you need a prescription, they can do that, but they usually try to use natural alternatives first.

I've been gluten-free for 14 months now and I feel great. I'm pregnant and I just can't believe what a difference this diet has made. So, there is hope! Good luck and think how much farther you than you were a year ago. You really have figured out a lot.

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NancyM and Flowergirl -- how do you make the coconut kefir? I started to google about it and wasn't sure where to start. One site said YOUNG coconut kefir -- is that the same? Is there somewhere you buy the ingredients?

Is it possible to buy this stuff pre-made anywhere?

Thanks so much!

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Hi Cate, see Nancy's thread here

My first few attempts was with canned coconut milk but afterwards I realised that it was coconut with added water. Now I've found a brand that cans 100% coconut milk, which is the liquid content of the coconut. I've also done one batch with coconut cream but it is too rich to have a large amount of at a time. I am using Ayam coconut milk at the moment, tho I'd rather use fresh coconut milk straight from the coconut because it is scary that they think it is neccessary to boil it up, homogenise it etc. I hate it when food manufacturers put food through so many processes. The nutrients die and the product becomes more useless with each process. :angry: Grrr :angry:

I know that Russian shops sell kefir ready made because it has been a staple food for them for years. It is usually made from cows milk and if you are lactose intolerant, you may have problems with it, or not. Otherwise you can buy the coconut milk at any grocery store and you can order or get kefir grains for free from the internet.

I hope you will benefit greatly if you decide to try it.

Flowergirl

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Flowergirl -- thank you thank you!

I'll keep you posted!

Several days now without soy or corn and I do feel better. But, BORING! No chocolate, no starch of any kind, no sugar unless it's in fruit and not too much of that.

I stand in front of the fridge and laugh -- what can I eat in here?

And then I go to the pantry and do the same thing.

Then I go back to the fridge and eat another carrot.

A scary number of my friends (all in different cities) have come down with undiagnosed chronic illnesses in the last year. Stress and environmental contaminants? Yikes, no?

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