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Is A Long Recovery Normal?


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#1 Zombie

 
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Posted 14 July 2010 - 06:19 AM

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. Iím quite obsessive-compulsive, so my doctor initially thought it was depression and I tried medication (Cipralex) for a few weeks, though I stopped before the end of the course because it made me feel much worse.

I spent a few months kind of living with this, though I was getting more frustrated with the whole situation, especially since during this time I was also dealing with chronic back pain as well as some pain in my right knee. During this time, I switched doctors who initially came to the same conclusions; that I had anxiety and that I needed to try and relax.

Eventually, I started to develop some other symptoms, mainly some pretty bad pain in my hands that was stopping me from doing every day things like using my phone or playing video games, etc. I went back to my GP who decided to do a full blood work up (she took 5 separate samples), and a week later she diagnosed me with Celiac. She also said that my calcium and Vitamin D levels were quite low, so prescribed some supplements for those. I even got a flu shot out of the bargain! She also suggested to try the gluten free diet for three months to see how things went, and then we could do a biopsy after that.

So now Iíve been gluten free for almost exactly two months and I donít feel any better; I still have the spacey, foggy, disconnected head feeling as well as a lot of fatigue; no matter how much I sleep or rest up, I feel exhausted all the time. Iíve also developed some other problems which Iím not sure I can attribute to Celiac; an occasionally painful bladder as well as tingly feelings in my hands, feet and lips. On the other hand, the hand pain has got a lot better, and my knee and back have improved as well, though this could be from joining the gym which I go to almost every day.

I was just wondering whether itís normal for things to take a long time to get better? I mean, sometimes I read about people who have started their gluten-free diet and felt better almost instantly (though they tend to have the GI symptoms which I havenít really had) but itís two months and Iím not really feeling any different. The worst part is, now Iím starting to doubt my doctorís diagnosis (though rationally I know that the blood test is pretty reliable) and I feel like I could have something worse. What is everyone elseís experience with the length of time is takes to feel normal again? Any advice?

Thanks for reading, I'm looking forward to hearing any responses or comments!
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#2 lucia

 
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Posted 14 July 2010 - 12:32 PM

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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#3 T.H.

 
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Posted 14 July 2010 - 04:49 PM

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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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#4 Skylark

 
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Posted 15 July 2010 - 09:16 AM

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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#5 Zombie

 
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Posted 15 July 2010 - 02:28 PM

Thanks for your comments everyone, itís reassuring that Iím not alone and what Iím experiencing is typical (if there is such thing) of Celiac.

Lucia; Iím sorry youíve been feeling poorly for a while too, hopefully things will start looking up soon :)

T.H; Iíve been considering an elimination diet (specifically for dairy to start with), though I think Iíll ride out the next month or so to see how being simply gluten free pans out for me. I went to the doc about my bladder a few weeks ago; given that my urine tests were coming up clean she proposed that it could be Interstitial Cystitis, though gave me some antibiotics to see how things went anyway (though I donít have a lot of the symptoms and Iím male, which Iíve read itís much less prevalent in so Iím not entirely sure how likely this could be).

Skylark; my doctor hasnít checked my thyroid, but I was thinking of making an appointment next week to discuss a few things, so Iíll certainly bring that up. Interesting that you mention the B12, as that was something that Iíd been reading about myself the last couple of days. I think I might pick some up tomorrow from the health store. In terms of multivitamins, Iím already taking prescribed vitamin D + calcium tablets, so I wasnít sure whether to take the multi vitamin instead of those (itís 1500mg of calcium and 10 micrograms of D3)

Iím committed to staying gluten free, anyway. Itís been quite an adventure so far finding all kinds of new foods and restaurants that I would never have tried!
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#6 Zombie

 
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Posted 16 July 2010 - 03:19 AM

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 canít attribute how I feel to those unfortunately (though I wish I could, I really want an explanation at this point!).

I talked to her a bit about the tingling that Iíd been experiencing, and suggested that Iíd read about peripheral neuropathy being linked to Celiac. She initially said she hadnít heard of celiac producing any neurological symptoms, though she did look it up and find that listed under the disease (though she did say that it would be more linked to vitamin deficiencies and that it would be more of a numbness than tingling; is this true?).

At any rate, we scheduled a fresh raft of blood tests for next week including zinc and vitamin K which I hadnít previously been tested for. I have a constant worry that my symptoms of tingling and fatigue are early signs of MS, so I brought this up with my doctor. I havenít had any optic or balance/co-ordination issues, and she looked at the back of my eyes to make sure everything looked okay there (it did), though she said if the tingling continued that I should see a neurologist. She said to me she didnít think any of my fatigue or other issues were MS related, though now because she debunked a few things which I thought I could attribute to Celiac, I feel kind of worried again. On the other hand, I know that she was getting a lot of information from her database (which she printed off for me, and it seems to be the more obvious symptoms of Celiac) so Iím not sure what to think now...
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#7 Coolclimates

 
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Posted 16 July 2010 - 05:37 AM

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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#8 julandjo

 
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Posted 16 July 2010 - 07:43 AM

At any rate, we scheduled a fresh raft of blood tests for next week including zinc and vitamin K which I hadnít previously been tested for. I have a constant worry that my symptoms of tingling and fatigue are early signs of MS, so I brought this up with my doctor. I havenít had any optic or balance/co-ordination issues, and she looked at the back of my eyes to make sure everything looked okay there (it did), though she said if the tingling continued that I should see a neurologist. She said to me she didnít think any of my fatigue or other issues were MS related, though now because she debunked a few things which I thought I could attribute to Celiac, I feel kind of worried again. On the other hand, I know that she was getting a lot of information from her database (which she printed off for me, and it seems to be the more obvious symptoms of Celiac) so Iím not sure what to think now...



Funny you mention this. Just a week ago I went to my doctor concerned about MS too! (I have an aunt on each side of the family with this.) I've been having numbness/tingling in my right hand and right foot, strange headaches/shooting pains in my head, fatigue. The doctor was concerned too and ordered an MRI for that same day. Results? Completely normal, praise God! When I mentioned to my dr. that I know neuropathy can be a part of Celiac, she seemed surprised and said "oh really? I didn't know that!". That doesn't give me a lot of confidence in her ability to treat me as a whole person, ya know? :blink:

Anyway, she wanted to refer me to a neurologist, but at this point I'm satisfied that I do not have MS or a brain tumor, so I'm going to wait it out and pray the diet change resolves it. Just wanted to let you know you're not alone!
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Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

#9 justChris

 
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Posted 02 August 2010 - 03:57 PM

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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#10 MMORRIS

 
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Posted 01 January 2011 - 06:46 PM

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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#11 Luddie

 
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Posted 02 January 2011 - 06:18 PM

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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#12 adab8ca

 
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Posted 03 January 2011 - 04:56 PM

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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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#13 SGWhiskers

 
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Posted 05 January 2011 - 05:43 PM

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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#14 adab8ca

 
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Posted 05 January 2011 - 06:30 PM

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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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy




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