Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could This Really Be Celiac?

9na

Recommended Posts

9na Rookie
9na
Posted

Hi! I've been reading ehre for a bit, and you all seem so nice and wise that I decided to register, to maybe get some good answers or useful thoughts ;)

I'm struggling quite a lot of symptoms, some constantly, others vary from day to day (or even hour to hour...). I first saw the doctor about a year ago, not much have happened. Dozens of blood-tests have been taken, the only thing found was Vitamin d deficiency (I've supplemented and am now in good levels). Next is biopsy to check for celiac (blood test was fine, but I hear they can be).

Well, I'm getting scared with new symptoms (and the 'old' ones...), and now I just want to list my symptoms (and describe them very shortly), and ask you guys - could this all really be celiac?

I'll list the symptoms in the order they appeared:

1) Giving birth (haha!- but it all started some months after my youngest was born, so I guess that could have started it all?)

2) Chest pain/pressure. Shortness of breath when exhausted.

3) Fatigue

4) Scalp pain/burning, mainly right side. My skin in the scalp is fine (or not - very dry, because of my thick and long hair... but the skin is not the problem..). It started as little 'dots' that was painful to the touch, now it is a bigger area. Changes a bit. I also have a heavy head/headaches from time to time, but nothing too horrible.

5) Tingling in fingers and toes. Also numbness, mainly left hand and fingers.

6) Bowel trouble. Most of the time I have bowel movements minimum twice daily (I never used to), sometimes as much as 3-4-5. Not lots of pain, but some from time to time.

7) Joint pain

8) Dry eyes - severely. My eye doctor also found that I have too little tear-production. Worst in right eye.

9) Dizzy spells

10) Nausea

11) Ears ache, and in periods they are 'clogged' very easily. This started a short time after I started wearing glasses (because I could no longer wear contacts), so I wonder if that is causing it? I hurt both in and behind the ears.

12) Neck and shoulder pain, neck feels stiff, a bit more tender to turn the head to the right than to the left. Muscles are sore.

13) Back pain, but that might be from all my sitting around...since I often can't manage to do much...

14) Burping. I burp a lot many days. Often after I eat, but sometimes even as I get up in the morning etc.

15) 'Cramps' on my left side, just below the ribs. This went on for a while, then disappeared.

16) Cold sensation - or what should I call it? Like shooting cold across my scalp, or through my thighs or from the neck down. Very unpleasant. But I've started taking B12, and there have been less of this lately - hoping it means the vitamins are helping.

17) Oh, and of course the Vitamin D deficiency. I was at about 12 when first tested (october), retest in March showed a level of 56, so that should be well on its way of recovery...

I probably forgot something, but these are at least many of my symptoms.

Some days I'm pretty good. Others are horrible. I also get really really scared often when I'm bad. I fear I have a brain tumor and can't seem to cope... I've been to a neurologist (on a good day...), she found nothing to worry about from her side.

My GP also says this does not seem dangerous. But I'm eager to know WHAT IT IS! I'm sick and tired and depressed from the fair and the not knowing anything..

Oh, and I think that I often get worse around my period (before or during), but not always. I also have believed that weather changes are bad for me (when it gets gray/rainy, for example). But it could be coinsidential...

Well, I could write for days, but I'm actually impressed if any of you have read all that I've written so far, so I'll end it here...

Thank you! :)

9na

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


9na Rookie
9na
Posted
  • Author

Oh, and I forgot to mention that I have really bad skin. Around my eyes and at the 'root' of my nose I have red, dry skin. And I have looots of acne on my back and shoulders - never had this before!

And I didn't mention that I did about a months of gluten free (not 'hard-core', but a careful attempt...) before my last doctors visit. By bowel seemed to getter better then, and I did have several good days - but also some really bad. But I guess it takes a while for symptoms to improve, and as I said I didn't do 'the real thing' - I bet I ate chocolate with gluten in it, I went to a party and probably ahd some sauce with gluten etc etc. Anyway, now I have to stay on gluten until the biopsy is done, so I can't experiment anymore, unfortunately.

Just read through my post and realized that I missed some things out ;)

MissBonnie Apprentice
MissBonnie
Posted

yes it could absolutely be celiac... you need a biopsy though. just get one asap and put your mind at ease!

9na Rookie
9na
Posted
  • Author

yes it could absolutely be celiac... you need a biopsy though. just get one asap and put your mind at ease!

I am getting one - my doctor has ordered one, but there's a long wait. Hope to get an appointment sometime in June.

mushroom Proficient
mushroom
Posted

Yes, it sounds awfully like celiac to me. But even if you test negative you still should try the gluten free diet because gluten can give you those symptoms even if you don't actually have celiac disease.

9na Rookie
9na
Posted
  • Author

Yes, it sounds awfully like celiac to me. But even if you test negative you still should try the gluten free diet because gluten can give you those symptoms even if you don't actually have celiac disease.

Thank you for your thoughts! :)

Yes, I'm definitely going gluten free after the test either way! Can't wait, really - as weird as it might sound ;)

If the test is fine but gluten is the problem, then it's called gluten intolerence rather than celiac, isn't that correct?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.