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Are These Celiac Symptoms?

Twitch

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Twitch Newbie
Twitch
Posted

I joined the board hoping that someone could tell me if my symptoms are generally characteristic of Celiac. I am awaiting to get tested next week and am only looking for your own opinion and experience. If this is on the wrong forum, please direct me where to post this and I will delete it!

I have had stomach problems for years now, with chronic gastritis and constipation. I got to where this was manageable with the help of Nexium.

However, over the past number of months I started developing some serious (to me) neurological issues from aggravating sensory issues (bug crawling feeling, pins/needles, etc) to full blown full body/random twitching which is all day every day, primarily when I lie down or relax.

I also have bouts with Hypnic Jerks (ie sleep starts). Not the ones that wake you up once your asleep but the ones that cause you to jerk as you are falling asleep. When all of this started I went abour 4 nights without any sleep. They now wax and wane and are not as strong and constant.

I have now developed extreme fatigue. I wake up feeling as if I haven’t slept at all. I don’t know if this is from my body twitching throughout the night (which it does), or something else. My legs feel like jello most days. Also, I have what could be called brain fog and a feeling ‘spacy’ (for lack of better term) which is worse on some days than others but is just about every day now.

Also, around the time the twitching started I have dry mouth and chronic thrush which will not go away despite nyastin (sp?) and diflukin (sp?).

Other related symptoms are constant constipation, headaches, occasional rashes in same places (ie fingers, angles, toes).

Anyways, I had a nurse friend tell me of someone that come in with some of my problems and he ended up testing for Celiac.

Are you aware of neurological issues coming because of this? Also, what about the thrush?

BTW, an MRI w/o contrast didn't show anything. I had low vitamin D and slightly low iron. Also had blood traces in urine. Other than that, everything tested ok (Vit. b12, electrolytes, thyroid, lyme, etc.)

Thanks ahead of time for any help!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. You do sound like you are in the right place. Glad you are getting tested but be sure not to go gluten free until all celiac related testing is done. After your testing is finished you should go gluten free even if the tests results are negative. Give it at least a few months as healing can be up and down for the first couple of months. Ask any other questions you need to and I hope your feeling better soon.

Twitch Newbie
Twitch
Posted
  • Author

Thanks for your response.

Would it matter if I have only been gluten for four days before the test? This is about how many days it will be when I take the test.

Again, thanks.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your response.

Would it matter if I have only been gluten for four days before the test? This is about how many days it will be when I take the test.

Again, thanks.

How long have you been gluten free? If it is more than a week then it may affect test results. If you have only been Gluten free for 4 days then just go back to it until the testing is finished including the endoscope if you are having one.

Twitch Newbie
Twitch
Posted
  • Author

How long have you been gluten free? If it is more than a week then it may affect test results. If you have only been Gluten free for 4 days then just go back to it until the testing is finished including the endoscope if you are having one.

I have been gluten free for only three days now. I should get a Doctors appointment Tuesday and thus test Tuesday. However, I started back eating regular tonight as you and others (as I have read) have suggested.

I would appreciate if others who are reading this would let me know if they have suffered from these neuro problems and if they ever went away (as I hope they will!).

Also, has anyone ever heard of oral thrush being related to Celiac?

Thanks.

Debbie48 Rookie
Debbie48
Posted

I have been gluten free for only three days now. I should get a Doctors appointment Tuesday and thus test Tuesday. However, I started back eating regular tonight as you and others (as I have read) have suggested.

I would appreciate if others who are reading this would let me know if they have suffered from these neuro problems and if they ever went away (as I hope they will!).

Also, has anyone ever heard of oral thrush being related to Celiac?

Thanks.

Neuro/muscular problems have been my main symptoms but some GI problems too. I tested positive on 1 out of 4 tests on blood work. Gene test came back with the celiac gene, category "high" risk for celiac. My biopsy was negative but it was done 3 months before celiac disease was suspected and only two biopsies were taken, so I don't put much stock in that.

I too am hopeful these horrible neuro/muscular symptoms will go away. I've only been gluten free for 3 weeks and so far no improvement. In fact, I feel a bit worse right now. Perhaps it gets worse before it gets better.

Hope you feel better soon!

What vitamins do you take?

Debbie

Aly1 Contributor
Aly1
Posted

I have had severe neuro problems - I've ended up in a wheelchair due to them - and yes, gluten intolerance and celiac can cause them. I can't comment on how long it takes to recover as I e only been gluten free for 3 months. What I can say is that this month I inadvertently glutened my self every day for 2 weeks (ugh!!!) and my neuro symptoms skyrocketed. I won't vote you with the details too much but will say they range from bone and skin pain, numbness, tingling, weakness, a "rubbery" feeling in my leg muscles, night-time spasms from my back down into my leg, foggy brain... Ok I'm starting to go on here. So absolutely, neuro symptoms are part of the picture. Just raise that for each of us it manifests in its own way.

As for oral thrush, I'm not sure, but I've spent a year and a half with a nearly constant vaginal yeast infection (candida) which interestingly began to resolve within the past month. Now that I glutened myself again, it's returned. So maybe there's a connection. I know that yeast infections occur frequently when the immune system is suppressed; being on gluten if you shouldn't be definitely stresses your immune system. So that might be the link...

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Aly1 Contributor
Aly1
Posted

Ps. Sorry here's a lot of typo's in my post - it's the auto-correct on my iPhone! :/

pricklypear1971 Community Regular
pricklypear1971
Posted

I think quite a few posters here have had (or still do) have yeast issues. For some, the gluten-free diet is all that's needed to clear it up, others need a strict yeast/sugar reducing diet.

In my case, I was told I had a yeast infection under my arms/chest and it wasn't...it was Dermatitis Herpetiformis - the skin form of Celiac.

Get your testing done, then try a gluten-free diet. Won't hurt and just just may help tremendously.

cbonner Newbie
cbonner
Posted

Twitch: Some of the symptoms you list sound very much like sleep apnea.You might try to get a sleep study to see if you are a candidate for c-pap therapy.Sometimes we are dealing with multiple issues that make it more difficult to find a solution and sometimes doctors can't see or don't want to see the solution.Good Luck and take control of your own search!

  • 2 weeks later...
Twitch Newbie
Twitch
Posted
  • Author

Thank you all for your responses. I do not have time to answer all the questions or comment on your helpful advice but did want to give an update on my situation.

As noted above, I went Gluten free before my blood tests (no biopsy yet) and they come back negative (don't have numbers yet). I am not saying it is because I went gluten free but maybe that is not my problem. How common is a false negative? Could simply being gluten free for four or so days matter on a blood test?

However, I am on my second week (maybe third) of gluten free and my tongue may be getting better, I'll come back and let you know.

Also, I got a stomach virus and my neuro problems increased drastically. Have any of you experienced an increase in your symptoms due to sickness? This is strange if it is celiac related.

maximoo Enthusiast
maximoo
Posted

Aly1 yeast infections occur when there is an overgrowth of yeast therefore disturbing the balance. Years ago I was getting them every 2 mths or so until my dr treated my husband too. So yeast problems can be passed from partner to partner. She gave him miconozole oinment (longer lasting than the cream) & voila the problem resolved itself. Also eating too much sugar contributes to the overgrowth of yeast. Even tho celiac may seem like it could be a culprit (and perhaps it is in some cases) there are too many cases where no correlation exists.

ravenwoodglass Mentor
ravenwoodglass
Posted

However, I am on my second week (maybe third) of gluten free and my tongue may be getting better, I'll come back and let you know.

Also, I got a stomach virus and my neuro problems increased drastically. Have any of you experienced an increase in your symptoms due to sickness? This is strange if it is celiac related.

Are you sure it was a virus and not a glutening? After we go gluten free and accidently get gluten our reactions can become stronger. That would also account for the increase in neuro symptoms.

Twitch Newbie
Twitch
Posted
  • Author

Are you sure it was a virus and not a glutening? After we go gluten free and accidently get gluten our reactions can become stronger. That would also account for the increase in neuro symptoms.

Well I had a CBC done today and the Dr said it looked like I was fighting off a virus. Plus my wife had the stomach virus.

However, I had never thought of that before. Thanks for the info as I did not know that.

Also, I would appreciate if someone would comment and let me know if going gluten free about 3-4 days before a blood test could result in a 2 point something (which mine was) on the gluten blood test and yet me still be positive.

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      how much gluten do I need to eat before blood tests?

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