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Newly Dx And Having Odd "issues"/symptoms

Guest ShannonL

By Guest ShannonL
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest ShannonL
Guest ShannonL
Posted

OK. I have celiac disease. i was told 5 years ago. Then 3 years ago was told was what allergy AND that if I wanted to eat wheat that I could and deal with the frequent bathroom visits. WELL, I ran with that. Now I am SICK. I feel so bad I feel like crying! Here are some of my issues. I have an appointment w/ and allergist and a GI next week just want to talk to you guys first:

1)numbness in several finger tips (my DH is a physical therapist and says not carpal tunnel)

2)This is my newest and scariest problem....it is HARD to explain. Sometimes I perceive a sensation like a twitch in my brain. I dont know how to explain it. It is not a "feeling" as in touch more like the world "moved" and I missed it less than a second long...

3)a wierd taste on my tongue....cant describe..nothing tastes right.

I have been gluten-free for about 1 week. Still want to sleep ALL day. Though I only sleep about 5-7 hours ....I have a sick baby

Any advise would be appreciated. I am scared!

Shannon

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lonewolf Collaborator
lonewolf
Posted

Well, beyond the obvious, "stay gluten free", I don't have much advice. I do have a question though. Do you drink a lot of diet pop with nutrasweet or aspartame? I used to have a similar weird feeling in my brain, though maybe more like I felt my brain shook for just a second. I traced it back to Nutrasweet. Stopped drinking pop and the weird feeling stopped.

TriticusToxicum Explorer
TriticusToxicum
Posted

Welcome!

Your symptoms are not that weird. Take a breath, relax. :)

I think the majority of us have ahd the tinglyfingers and toes and brain fog, dizziness, vertigo-y sensations. I've never had the taste problem, but I'm guessing somebody here has. The most likely culprit it a deficiency in key vitamins and minerals. Celiac disease attacks your body's ability to absorb nutients from the food you eat. So if you've been "off the wagon" for a couple of years chances are that you've done some damage (reversible) to your intestines. Go see a gastroenterologist or have your doctor run a blood panel and check your vitamins/minerals. Keep working on the gluten-free diet, it is the only way your body will heal.

Spend some time here, read, ask questions. There a re alot of good people here who have trosd the path ahead of you and will share solid advice.

I hope you feel better soon.

AndreaB Contributor
AndreaB
Posted

Yes, get tested for vitamin/mineral deficiencies. Sounds like it "could" be vit b12 for starters. Please have it checked out though, it may be something else. Also aspartate can cause lots of problems.

jesscarmel Enthusiast
jesscarmel
Posted
OK. I have celiac disease. i was told 5 years ago. Then 3 years ago was told was what allergy AND that if I wanted to eat wheat that I could and deal with the frequent bathroom visits. WELL, I ran with that. Now I am SICK. I feel so bad I feel like crying! Here are some of my issues. I have an appointment w/ and allergist and a GI next week just want to talk to you guys first:

1)numbness in several finger tips (my DH is a physical therapist and says not carpal tunnel)

2)This is my newest and scariest problem....it is HARD to explain. Sometimes I perceive a sensation like a twitch in my brain. I dont know how to explain it. It is not a "feeling" as in touch more like the world "moved" and I missed it less than a second long...

3)a wierd taste on my tongue....cant describe..nothing tastes right.

I have been gluten-free for about 1 week. Still want to sleep ALL day. Though I only sleep about 5-7 hours ....I have a sick baby

Any advise would be appreciated. I am scared!

Shannon

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Hi Sharon

I also get numbness/tingly feeling in a few of my fingers on my left hand mostly at night. some people here have said it is peripheral neuropathy but my dr is convinced once you go on the diet you are magically cured. i also have the sensation of the room moving- very scary. all the drs i have seen haVe said inner ear imbalance but ive only gotten it since being gluten free so i dont think it is. i also got worse on teh diet before i got better and i was EXHAUSTEd for months when i started the diet!!!

i hope you feel better!

Jess

daffadilly Apprentice
daffadilly
Posted

Sharon, sorry you are having troubles, & so sorry that you got such stupid advice as to eat gluten. Of course you have to go gluten free immediately. I also second someone's comment on the nutrasweet AND ALL artificial sweetners - get that stuff out of your diet immediately. Throw your toothpaste away - has artificial sweetner in them all, & use baking soda, just rinse before you spit :D , you will get used to it.

ALSO, IMO that taste in your mouth is from barley, Barley is a killer to those of us that react strongly to it (like me). Barley is in every bought donut, roll, & bagel on the market. For me it left a metallic taste in my mouth. I have been "allergic" to barley & oats since I was about 25, which was about 35 years ago. I made my wheat stuff at home, then 12 years ago, gave up wheat mostly, thinking allergies, have been totally gluten-free for 2 1/2 years, but can still remember that horrible metallic taste from barley.

Also, forget all that junk about doing a gluten trial, that is just doctor speak for let me experiment on you & collect some more insurance money in the process, & well you know no one can sue me because I told you to eat wheat, the bread of life that we have lived on for millenium, but hey our health in this modern day is now getting worse, uh due to stress. Well the 50% more gluten in wheat today than 50 years ago, just makes it all that much better (NOT).

rinne Apprentice
rinne
Posted

Hi, I'm sorry you are feeling so rotten.

In my case I have found that it is important to be a detective about my health, for example my regular doctor seemed to think that a level of 226 was O.K. for my B 12 but that is very low. The range of normal they put on the test that the doctor uses as a measurement says acceptable levels are between 176 and 786 or something close to that but by the time you get to 226 you need B 12 injections. So you see, many times we have to figure these things out for ourselves. I found a new doctor and have started monthly injections.

It takes time for a gluten free diet to work and dairy may be an issue also. It is important to give it some time to see what the benefits are for you and if you are still having problems then it will be important to investigate them too.

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CDFAMILY Rookie
CDFAMILY
Posted

Shannon,

It sounds like you have the neurological presentation of Celiac Disease. I too had some major neuropathy problems and also a lot of weird things going on in my brain. My head would go numb quite often, sometimes I had pressure like someone wrapped my head in a rubber band and would tighten, sometimes I would get this warm feeling in my brain.

My taste was off for quite awhile and I did not ever touch diet anything. I also would get the mouth ulcer constantly.

As far as the neuropathy, I had all the tingling, electric shocks, jerking and visual problems that go along with this form of Celiac.

If you want a true Celiac test, I would stay on wheat for another week or so just to get proper testing. If you don't care then stay off of the wheat and go with what feels right.

Could you explain why they said you had Celiac Disease and then changed to just an allergy? Did you have blood tests and a biopsy at one time? What were the results? If they were positive once, you do not have to prove yourself again. Did they ever do any vitamin testing. Rinne is correct about the B12, you can have numbers in the 300-400 and still be deficient. By the time you get to 200, you are very sick. Also, if you have taken B12 supplements a test will not be accurate as the vitamin floods the blood but may not absorb into the muscle where it is stored. A good place to read up on this is in the gluten file. Here is the link:

Open Original Shared Link

Take care,

CDMOM

Guest ShannonL
Guest ShannonL
Posted
Hi, I'm sorry you are feeling so rotten.

In my case I have found that it is important to be a detective about my health, for example my regular doctor seemed to think that a level of 226 was O.K. for my B 12 but that is very low. The range of normal they put on the test that the doctor uses as a measurement says acceptable levels are between 176 and 786 or something close to that but by the time you get to 226 you need B 12 injections. So you see, many times we have to figure these things out for ourselves. I found a new doctor and have started monthly injections.

It takes time for a gluten free diet to work and dairy may be an issue also. It is important to give it some time to see what the benefits are for you and if you are still having problems then it will be important to investigate them too.

I had a postive test and a ify biopsy the doctor made me made and I went to a new dr. She is the one that said since the tests came back neg than I was allergic...Turns out it was because I was gluten-free!!! what a quack she was....Anyway trying to be gluten-free..my 8 mo dd is in the hospital and it is hard when I cant make my own food! Coudl youtell me where to get good info on the neuropathy....I cant find anything. ALSO I have been taking B12...darn. I have an appt with the GI Wed! No more gluten for me. I have felt soooo much better. Had some issues today but that is becuase this STUPID hospital cant send a true gluten-free tray! Sent me a bisquit with my breakfast! Any suggestions on what to eat would be great. I am sick of bananas! Also is Peter Pan peanut butter gluten-free? I found some in the kitchen...would sure add some life to those bananas!

daffadilly Apprentice
daffadilly
Posted

almost all peanut butter is gluten-free, you can read the label.

Is your daughter gluten-free also?

Guest ShannonL
Guest ShannonL
Posted

is now!

Shannon

rinne Apprentice
rinne
Posted

Here's a link: Open Original Shared Link

Are you taking the B Vitamins orally? If you had a positive diagnosis but an iffy biopsy then that means you have Celiac as I understand it. The fact that the damage was iffy may mean that you haven't done much damage yet, that is a good thing. It is important to remember that the biopsy diagnoses damage and how much damage they find will depend on the number of samples they took. Do you know how many? When there is damage there are problems with malabsorption and B Vitamins are not absorbed through digestion, once they get very low they are generally addressed with injections. There is an organic source if that is a concern of yours, I have the name.

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