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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.

Is A Long Recovery Normal?
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14 posts in this topic

During late October last year, I started to feel kind of spacey and disconnected all the time with bouts of crushing fatigue that would last a few days at a time. I

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Sounds like you have the classic neurological symptoms associated with celiac: brain fog, possibly depression, and what's called "peripheral neuropathy" which describes the pain and tingling in your hands.

I've been asking myself the same question now going on 3 and 1/2 months gluten free, but I haven't found an answer. Celiac and the recovery process are different for everyone. I have noticed, reading these boards and Dr. Peter Green's book, that the neurological symptoms take longer to recede. Hang in there!

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I've heard that it can take some time to recover. Some people also notice something called 'gluten withdrawal,' which seems to have some similarity to your symptoms, but I haven't experienced it myself. Hopefully someone here will say what that was like for them. :-)

As for me, when I went gluten free and immediately started feeling spacey, foggy headed, and other symptoms, it turned out to be food allergies and sensitivities that had never been diagnosed until then. Some of them don't show up on any test as a problem, but since going on an elimination diet to see how I did and avoiding the foods that seemed bad, ALL the bad stuff went away.

I had so many things I reacted to that I felt bad all the time. I had a lot of nerve pain in my back and hands and feet, as well - turns out I get it when I eat corn (It's in iodized salt, almost any powder...it's everywhere, I swear. I had to go to a corn allergy site to find all the sources in my diet). I have since met many people with allergies, and a number of us have no hives, no itching, but pain and nerve problems (from inflammation) and fatigue and feel spacey and out of it.

If it helps, this is what I did that helped me out. I dropped the 8 most common food allergens from my diet. I kept a food log of what I ate and how I felt. What I WISH I'd done was eat the exact same diet for 2-3 days in a row, and then change to a completely different diet, with not one thing in common(not even salt or oil), for the next 2-3 days. It helps space out reactions so you can see if you are having any, because some are delayed for 24 hours or so, if it involves an intolerance. Eliminating the 8 allergens was how I found corn, because the other reactions spaced out enough that I finally started to notice the pattern.

Also, right now, whenever I GET a bad food, my kidneys hurt. We don't know why, although the docs are wondering if perhaps it's simply inflammation. Perhaps similar with the bladder? :unsure:

But for the bladder? I would mention that to doc - sometimes, there can be issues with our organs from our vitamin deficiencies after all this time, so it's worth being careful about!

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Sorry you feel so rotten. Has your doctor made sure your thyroid is working properly? Spacey/tired can be a sign of hypothryoidism, which tends to go with celiac disease.

The neural problems are slower to go away. Some folks with neuro issues notice they have to be super-strict with the diet. The other thing you may want to do is pick up some sublingual vitamin B12 and a high-quality multivitamin. A lot of celiacs have low B12 and it can really mess with your mind and nervous system, including making you tired and spacey.

The blood test IS reliable and you need to be off gluten to keep from developing osteoporosis, other autoimmune problems, and possibly intestinal cancer no matter whether you feel much different off it. I really hope your symptoms start to resolve.

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Thanks for your comments everyone, it

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I went to see my doctor this morning; I talked to her a bit more about my bladder problems and she agreed to refer me to a urologist. I brought up the fact that I was still feeling tired after two months of the diet and the Thyroid and B12 suggestions. As it turns out, those things were already tested when I had my blood test and were fine, so I guess I can

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I'm in kind of a similar situation as you. I've been diagnosed with celiac 2 1/2 months ago and have been on the gluten-free diet since then. But I haven't felt much better. I heard that the people who do feel better really fast often have the stomach problems. I have acid reflux, but other than that, no stomach problems.

I, too, suffer from anxiety and some depression and ocd. But this runs in nearly everyone on my mom's side of the family.

I also feel really tired all the time, have restless leg syndrome, leg cramps, insomnia. To a lesser degree, I have back problems, acne, easy bruising, frequent nose bleeds, frequent yeast infections, sinus pain and headaches and have lost some weight.

I don't feel much better so I, too, wonder if I really have celiac disease or if it's something more. I'm beginning to think that I have lactose intolerance and that I should give up dairy for several months and see if I feel better. I just got a whole lot of tests for allergies and they all came out out negative (including wheat!). But I've been told that an allergy is a completely different thing than an intolerance. Hence, I have gluten intolerance (and celiac disease) but no gluten allergies. Weird.

Anyway, I understand what you're going through.

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At any rate, we scheduled a fresh raft of blood tests for next week including zinc and vitamin K which I hadn

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zombi and julandjo

i've been dealing with crazy neuro symptoms like the both of you. dealing with muscle spasms, muscle wasting, fatigue, numbness, all body muscle and joint pain. everything i do on a daily basis is such a chore. anywho, i figured i had MS or ALS and saw the neuro a few times and mri, ct, and exam all came back good.

All my symptoms continue to get worse and i feel no better. Only found out 2 weeks ago and started the diet then - stupid me did not realize my vitamin had gluten. Either way now only 4-5 days in and hope this gets better.

good to know i'm not crazy with path of symptoms and going worse case disease.

best of luck and pls post more as i need reassurance that these symptoms will go away and are releated to the celiac. im not 100% convinved this diet will fix all that bothers me but....let's see

all the best,

chris

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I HAVE BEEN TOTALLY GLUTEN FREE FOR ABOUT 2 MONTHS STILL HAVING SEVERE HAND PAIN , NEUROPATHY SYMPTOMS AND SWOLLEN LYMPH GLANDS. HAS YOUR SYMPTOMS CHANGED YET.HOPING SOMEONE CAN HELP WITH GOOD NEWS.

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I'm hearing all of you! I've been on (what I believed was) a gluten free diet for 9 months. I was feeling better, my blood work was better, but somehow, somewhere, some gluten sneaked in and WHAM really messed me up! Tingly/numb toes, sore (burning) knee, sore fingers, a whole bunch of neurological things. I think I've had celiac for many years and didn't know it and had migraines and bad leg cramps, a goiter, plus a few other aches and pains. I'm glad to report those symptoms have all gone away. My doc says the new ones are ALL due to the celiac disease and the fact that I'm not absorbing vitamins and minerals correctly yet. So, my duty is to absolutely make sure there is NO gluten in anything I eat...or wear...such as cosmetics, toothpaste, mouthwash,soap, etc. Molecules of gluten are teeny so it's really important to think of all the places the little stinkers can hide! I am now officially off ALL grains. We'll see if that changes anything. I am slowly feeling better.

I've been researching a lot, and though I'm probably not going to change much (except go on an elimination diet)there is an interesting diet called the Specific Carbohydrate Diet which talks a lot more about the various things that can be done to help sick intestines (besides the gluten free diet). It's very interesting and I think helpful to get some broader perspectives.

Good luck to ALL of us in this same wobbly boat! I think joining this website/forum has really been wonderful. It's so good to be able to talk to others experiencing the same stuff (and know that I'll be heard and listened to with compassion).

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I am chiming in here, joining you all...4 months gluten-free and some days I feel like CRAP. Like a bad flu...

I don't have the energy to try to test other intolerances but i guess that is my next step. I thought that other intolerances would manifest as stomach issues but it seems not!

i HAVE put on weight and I think some of the nerve stuff is better SOME days but still so tired and struggling.

I guess it is one day at a time. Today was NOT a good day at all. My shins feel like the worst shin splints and all my feet nerves are so sore. Grrrr.

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I'm sorry so many of you are on this road. It really is scary and frustrating. I'll first say that it is possible that celiac caused or is related to another possible autoimmune disease that you might have such as MS, RA or fibromylagia. It is also possible that like many celiacs (including me) with neuro problems, it is just taking a long time for you to recover. I'm 2.5 years into this and I consider myself still in the recovery phase. I have to be more strict than some of the other posters here in order to avoid accidental glutenings. I have to sleep more and take it slow and stead in order to be successful. I've had to cut out other foods that either I tested allergic to or I've figured out I'm intolerant of. I've had to make my house gluten free. All of those have added up to improvements in the way I feel over time. Unfortunately, it really has been time and strictness in the diet.

Google Gluten Ataxia for info on some of the ways gluten can affect the brain.

As for recovery time. At 3 months, I had had some better days off and on. I was able to walk 1/4 of a mile without stopping. I was sleeping only about 16 hours/day instead of 20. I wasn't crying from the skin tenderness anymore. I still had muscle, joint, bone, and head pain. I still had lots of neuropathy. I still had terrible fatigue and confusion. I still had vertigo, faintness, and blood pressure problems. I was also ravenously hungry once I got good at gluten free. Everything improved in baby steps. Nothing is totally gone, but most are much better and manageable. I started physical therapy and was educated on how to do trigger point therapy on myself. I do this about an hour every evening, and it has really helped to decrease my muscle pain. I'm still have significant word finding problems and it takes me longer to think about things. Reading is difficult on both my brain and my vestibular system, but it has improved as well. My neuropathy is almost gone. My fatigue is still present, but I can function on 9 hours of sleep and if left to sleep all day or nap, I would max out at around 12 hours. I'm working again and enjoy what I do more than ever.

I expect that I've done some permanent damage to my neurologic system, but most things have improved slowly. Every time I get accidentally glutened, I have a huge setback for 2 weeks and it takes me 6-8 weeks to feel like I'm back to me. Give it time and your strictest attention and things will slowly improve. Consider other possible causes of your symptoms, but know that it still may be just celiac. Also, do some of your own research on the neuro symptoms of celiac, because it is old school thinking that celiac causes neuro damage from just vitamin deficiencies. We now know gluten has systemic effects and can cause damage to all parts of your body. If you find a good article, give it to the doc. She may just get good at finding the other 1% of her patients with celiac.

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I'm sorry so many of you are on this road. It really is scary and frustrating. I'll first say that it is possible that celiac caused or is related to another possible autoimmune disease that you might have such as MS, RA or fibromylagia. It is also possible that like many celiacs (including me) with neuro problems, it is just taking a long time for you to recover. I'm 2.5 years into this and I consider myself still in the recovery phase. I have to be more strict than some of the other posters here in order to avoid accidental glutenings. I have to sleep more and take it slow and stead in order to be successful. I've had to cut out other foods that either I tested allergic to or I've figured out I'm intolerant of. I've had to make my house gluten free. All of those have added up to improvements in the way I feel over time. Unfortunately, it really has been time and strictness in the diet.

Google Gluten Ataxia for info on some of the ways gluten can affect the brain.

As for recovery time. At 3 months, I had had some better days off and on. I was able to walk 1/4 of a mile without stopping. I was sleeping only about 16 hours/day instead of 20. I wasn't crying from the skin tenderness anymore. I still had muscle, joint, bone, and head pain. I still had lots of neuropathy. I still had terrible fatigue and confusion. I still had vertigo, faintness, and blood pressure problems. I was also ravenously hungry once I got good at gluten free. Everything improved in baby steps. Nothing is totally gone, but most are much better and manageable. I started physical therapy and was educated on how to do trigger point therapy on myself. I do this about an hour every evening, and it has really helped to decrease my muscle pain. I'm still have significant word finding problems and it takes me longer to think about things. Reading is difficult on both my brain and my vestibular system, but it has improved as well. My neuropathy is almost gone. My fatigue is still present, but I can function on 9 hours of sleep and if left to sleep all day or nap, I would max out at around 12 hours. I'm working again and enjoy what I do more than ever.

I expect that I've done some permanent damage to my neurologic system, but most things have improved slowly. Every time I get accidentally glutened, I have a huge setback for 2 weeks and it takes me 6-8 weeks to feel like I'm back to me. Give it time and your strictest attention and things will slowly improve. Consider other possible causes of your symptoms, but know that it still may be just celiac. Also, do some of your own research on the neuro symptoms of celiac, because it is old school thinking that celiac causes neuro damage from just vitamin deficiencies. We now know gluten has systemic effects and can cause damage to all parts of your body. If you find a good article, give it to the doc. She may just get good at finding the other 1% of her patients with celiac.

This disease can just be hellish. I totally relate to so many of your symptoms. I have been tested for MS and RA so far and all negative but it is shocking how freaking disabling this can be. Most people don't understand, since I seem so much better (not wasting away, sleeping better and the crippling depression and anxiety is so much better) but I am still nowhere NEAR myself. Maybe I never will be and this is the new normal and I need to get used to it but I am also trying to be very strict. It does help when I hear others stories of long recoveries but slowly getting better because my doctors have never seen anything like me and don't know what else they can do. All the doctors said "you should feel better in a few weeks"..oh I don't think so :(

hugs to you all

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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