• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Undiagnosed Issue
0

15 posts in this topic

I was officially diagnosed with celiac a year ago. I have been gluten free for that year and I am now starting with a host of other issues. My doctor is confused and I am left just dealing with all of these issues. A few months ago I had an incident while driving where I started to go dizzy and blacking out. I had to sit on the side of the road for a few minutes but it did go away and I never had that experience again. But a month after that I started having numbness and tingling in my right arm. Some days the pain will also be in the left arm or even my legs. I do have moments where my legs feel weak and I'm pretty sure I am going to fall. I don't have this issue every day. But I would say that I do have it at least 3 days a week. My doctor did a blood test to make sure my thyroid and iron was normal. Then he ordered an MRI and a nerve study. All came back normal. I have had an issue with constipation even though I eat a ton of fiber and I take senna. But I don't think that is related to my arm issue. Does any of this sound familiar to anyone else? Could celiac be causing other problems? Thanks for the help.

Nicole

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


These are all symptoms of celiac neurological issues. That and the chronic constipation suggest you are still getting cross contaminated in some way. Try reviewing everything that goes into your mouth, and seeing if you can weed out where the possible culprit is. You may be a super sensitive, and have to be super vigilant about medications, what brands of foods you use and what sort of lotion you put on your hands, etc. Also, pet foods and pet saliva can be another way to get cc'd, and even some kitty litters contain wheat, so you may want to check that, if it applies to your situation.

0

Share this post


Link to post
Share on other sites

Hi,

Your doctor should test all you vitamins / mineral levels to see if they are normal. You may not be healed enough to absorb them completely at 12 months. You also should look very carefully at what you are eating and make sure there is no hidden gluten in the foods. Things you drink like coffee an tea need to be checked and also vitamin pills and meds.

0

Share this post


Link to post
Share on other sites

Have you had your vitamin B12 levels checked? You can experience tingling and numbness if you're deficient in B12.

As for the dizziness and blacking out, I also had problems with this and a blood test revealed low blood sugar (was 50 AFTER eating). Even though you've been gluten-free for a year, your stomach may not be fully healed yet so you might still be having trouble absorbing carbohydrates (well that's my problem anyway).

But I do believe Coeliac could be causing all of these problems.

0

Share this post


Link to post
Share on other sites

You are describing symptoms of Vitamin B deficiency, especially B12 (very common in people with celiac). Your doctor should be monitoring your B12 and folic acid on a regular basis. You didn't mention this, so I'm assuming your doctor is unaware of this common malabsorption problem among celiacs. You can request an immediate test, or you can begin taking 2000 micrograms of sublingual Methyl B12 twice a day under your tongue. It's cheap and found over the counter. If a B12 deficiency is causing the numbness and dizziness, it should be alleviated in short order with a sublingual treatment. It's possible that your doctor will order B12 injections, but, in the interim, the sublingual method should work well.

You may wish to buy a Vitamin B complex to take on a regular basis. B vitamins are water soluble, so you don't have to worry about toxicity if you take a daily Vitamin B complex.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Please read my response on your other thread--it may be pertinent.

0

Share this post


Link to post
Share on other sites

My doctor is learning about celiac through me. Unfortunately he doesn't know a lot. I didn't realize that vitamin B could cause things like this. I will check on that immediately. I assumed that once i was gluten free I would be absorbing all the nutrients and I was in the clear. I will have to keep an eye on this forever? And is there anything else I need to monitor? Thank you so much for the help.

Nicole

0

Share this post


Link to post
Share on other sites




Yes, besides iron, thyroid, Vitamin B12, and folic acid, your doctor needs to monitor your Vitamin D level. These are standard tests for people with celiac. Even though you've adopted a gluten-free diet, you may still be healing....so absorption is something that needs to be checked periodically.

0

Share this post


Link to post
Share on other sites

Thank you I will have those checked. I know my TSH has been fluctuating between .5 and 5.7. But they don't seem concerned and just leave it alone. Do you know if it's the GP that should be testing all of this or if it's the GI doctor? Thanks.

0

Share this post


Link to post
Share on other sites

I get tested through my GP. And has your doctor explained why you're having such a HUGE fluctuation in your TSH? It sounds as though you might have Hashimoto's (which does go up and down). If your GP is not an expert on thyroid, perhaps you can get a referral to an endocrinologist.

0

Share this post


Link to post
Share on other sites




I think I will have to find a new doctor. My GP really has no idea what to do with me. When I was originally thought to have celiac disease it was my GI that saw the 5.7 level. He told me not to worry because the gluten free diet may regulate the thyroid. So unless it goes way out of the normal markings I understand they will just leave it alone. Does that sound right? I also know that my iron has been a major problem over the years but again they are reluctant to treat it. From what I have been told I have iron in my body but it's not binding. That was one of the indicators of celiac.

0

Share this post


Link to post
Share on other sites

I think I will have to find a new doctor. My GP really has no idea what to do with me. When I was originally thought to have celiac disease it was my GI that saw the 5.7 level. He told me not to worry because the gluten free diet may regulate the thyroid. So unless it goes way out of the normal markings I understand they will just leave it alone. Does that sound right? I also know that my iron has been a major problem over the years but again they are reluctant to treat it. From what I have been told I have iron in my body but it's not binding. That was one of the indicators of celiac.

No. A TSH of 5.7 can give you every nasty symptom of hypothyroidism on the planet, especially exhaustion and c.

You need to be tested for Hashis antibodies, and at least try thyroid replacement therapy. It may be the problem, not extraneous gluten.

0

Share this post


Link to post
Share on other sites

TMI ALERT lol Even after going gluten-free I had bad c. My tummy laughed when I tried magnesium citrate. It just looked and said "this is all you got?" lol Even after going on levo nothing. My TSH was around where yours is 5. something. I started taking armour and it has gotten a lot better.

Like the others mentioned have your B12, Vit D, iron, all of that checked. I was low in all of these and feel like crap :( And like you some days are better than others. With the b12 if your test comes back in range but is under 500 it's low. My labs even had a note saying if your b12 is between 200-400 may experience neuropsychiatric and hematologic abnormalities. Um hello that doesn't sound normal to me! In Japan their "low normal" is 500. My labs "low normal" is 200.

"In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered

0

Share this post


Link to post
Share on other sites

I agree with PricklyPear; an out of balance thyroid can cause a whole myriad of symptoms. I am always looking for a natural solution and am not a huge fan of medications at all but, in the case of thyroid, it can be helpful. Just don't let them talk you into radiation. The meds only work for me sometimes. I have a suspicion that the pigs that they harvest the thyroid from are not tested before extraction. So if the pig had thyroid problems... lol. I watched a video by Andrea Beaman, a holistic health counselor, on healing thyroid conditions that was very informative. Some of her suggestions and things I have learned from school(Institute for Integrative Nutrition), in regards to thyroid, may be helpful to you. Try to not consume foods with goitrogenes because they suppress thyroid function. You can find list online of specifics of that. Cruciferious veggies, strawberries, some nuts, ect.. If they are cooked the goitrogenes are released and its not a issue. Also adjust the types of iodine you eat. Use sea salt instead of table salt, eat lots of seaweeds and fermented foods. Paying attention to getting the right kinds of fat can also be helpful(that will help with digestion too.) Good luck with all of this. I know how frustrating it can be to feel terrible and not know what to do. Hope some of these suggestions help you.

0

Share this post


Link to post
Share on other sites

You should get another endoscopy to see how well your intestines have healed too. I'm going to get one in a year's time, because that's standard practice. Well, actually 6-12 months was what my GI told me, but I told him I'd rather get one in a year because my damage was so extensive and I've read a lot about how long it can take to heal, and I don't want to go in at 6 months to find litle has changed and then fall off the gluten free bandwagon or something else stupider.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,373
    • Total Posts
      935,737
  • Member Statistics

    • Total Members
      65,053
    • Most Online
      3,093

    Newest Member
    RichardNDL
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi.  I'm new to this!  Please help me get started. I want to try..I mean DO...a gluten free life so that, hopefully, my health issues will go away. So, please help me.
    • Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER.  I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me)  Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage.  My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another)
      Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...)
      Stomach cramping/spasm feelings
      On and off nausesa, any time of day.
      Inability to sleep. 
      Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.)
      Headaches/migraines
      Fatigue
      Lightheadedness at times
      Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.)
      On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is)
      Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) .  I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing..
      I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
      There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... 
      Sharp/ache like pains everywhere in my body.
      There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related.



      I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse. Is testing for a second time worth it? If it is, what tests should I really be focusing on to figure out if this is my problem?
    • Thanks for the responses raven and cyclinglady!  I guess we just have to wait.  Is it wrong that I want there to be no question that its celiac?  She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know? For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat.  Then I guess I'll decide how gluten-free the rest of us should be. On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?    
    • https://okinawahai.com/tips-for-eating-gluten-free-in-okinawa/ Hope this helps!
    • Sorry you're feeling poorly Have you seen this page: https://www.peoplespharmacy.com/2015/07/27/getting-off-ppis-can-be-a-challenge/ I think you can get gluten free DGL, maybe worth a try?
  • Upcoming Events