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

Do I Have Gluten Problems, Very Sick For A Long Time, Diet Best Way To Figure It Out?


johnny555

Recommended Posts

johnny555 Newbie

I think the Gluten free diet is in order, but I have never had the energy or motivation to do it. I've had Chronic Fatigue for 20 years, been out of work and sick most of that time. Everytime I think I am getting back on my feet I am hit again. Antidepressants have helped at times. I seem to match all of the symptoms. 

Exhaustion - Sleep 15 hours a day when bad
Constipation - Bad
Itchy all over
Food insensivities - corn, diary, sugar
Clinical Depression/Anxiety
Foggy Head
Sugar Cravings
Joint Pain

Is the diet the best way to figure out what is going on? There is "nothing" wrong according to all regular tests that the doctor would give you. I have not been tested for celiacs(or maybe I have but that doesn't matter I don't think. Just go for the diet? 
 


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



Celiac.com Sponsor (A8-M):



eblue Apprentice

It does sound like you have symptoms of celiac. I would get tested. A blood test can change your life.

But it is really up to you. Many people on here are unofficially diagnosed and do extremely well with a gluten free diet. However, just KNOWING is kind of nice, and would probably make it much easier to stick to the strict diet in the long run. If you do get tested though, be sure that you are eating plenty of gluten until the test, otherwise you get get a false negative. I hope you get to feeling better soon!

BelleVie Enthusiast

Get tested! Once you go gluten free, your test results will no longer be accurate. 

1desperateladysaved Proficient

If you have been eating gluten normally, now would be the time to get blood tests.  The final test is the diet and response to it.  Can someone please post the list of tests, so he can figure out what tests he needs.

 

Tests for antibodies for gluten

Tests to see what nutrients are low.

 

I hope you will soon be on the mend.  You have suffered long and hard.  I think you may have the right idea in thinking of gluten!

 

D

Mr. GF in Indiana Newbie

You can only get a medical answer using the best tools of medicine available, which are now on the internet, such as pubmed.com, rightdiagnosis.com, and a hundred other web sites and forums.

RESIST jumping to conclusions. RESIST quackery and utter nonsense.

You don't mention your thyroid situation. Check it, re-check it, and research it. Also, adrenals.

You may have drug/supplement interactions, check and recheck on rxlist.com. MANY drugs and supplements will wallop someone with celiac disease or a dozen other metabolic diseases.

You may also have one of the common sensitivities/allergies: wheat, corn, milk, egg, etc.

If you think food is a cause, get serious about scientifically nailing down what foods you can eat without any reaction, then add a small amount of suspect foods and see if there is a reaction. This can take months of cautious effort, even years. Repeat each test several times. Some food reactions have no immediate visible symptoms, but the food still can damage the person, so that's a tricky problem.

Apparently, about sixty percent of those who are correctly diagnosed celiac still intentionally eat wheat, though, so if you are not motivated to devote yourself to a stringent diet and always looking to the long run, then there's no point experimenting with celiac. Also, it takes a huge amount of education and caution to be gluten free, due to our rather screwed up food supply system (example, restaurants will be a dangerous challenge). I doubt you will find quick or easy answers.

But first, foremost, if you will try these ideas: SEE A COMPETENT DOCTOR, or more than one as needed, and take nothing at face value. If you have anyone in your life who can help you with these things, have them double check everything with you and do their own internet research. Do not expect anyone in medicine to care or to be willing to research anything for you or even listen to you. As to celiac disease, less than 1% of the population seems to have it, so your hope that you may be on to your main problem...99/100 says you aren't.

I can't give you the benefit of my own situation or research, I don't have enough information and I'm not a doctor, but I will suggest you research whether you have narcolepsy or epilepsy and whether Provigil or xyrem will help you, neither of which are to be experimented with lightly. Oh...on that constipation, try three very small apples a day...yep, it's an effort. Or miralax. If the miralax makes you immediately and noticeably fatigued even more...research whether you have a "leaky gut".

nvsmom Community Regular

Welcome to the board.

I'm good at spouting off tests so...The most common celiac tests are:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG

You must be eating gluten in the weeks priopr to testing in order to have valid results.  The first three tests show damage to the villi of the intestine, and the last test shows a sensitivity to gliadin (gluten) which can be present in Non-Celiac Gluten sensitivity (NCGS) as well as in celiacs. 

 

This report has more info (pages 11-12): Open Original Shared Link

 

Celiacs are often low is B12, D, ferritin, iron, potassium, calcium, zinc, and sometimes magnesium. About 1/10 celiacs have thyroid problems so you might want that checked too as that (hypothyroidism) could cause all the symptoms you listed as well. Request a TSH (should be near 1), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

Good luck. I hope you feel better soon.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    2. - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

    4. - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

    5. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748

    LG2
    Newest Member
    LG2
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Francis M
      Absolutely my point with Kerrigan, the owner. She stood to secure many years of faithful patronage by simply inviting us in for a pastry or lunch. Or by simply producing another $50 e-card based on trust. We would have been highly satisfied. We are limited to a few restaurants in the area, and that would have been one. It was very disappointing, esp to my wife, to realize we can't patronize the place anymore.
×
×
  • 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.