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

Suggestions Needed For Next Step...

tummytroubles

Recommended Posts

tummytroubles Newbie
tummytroubles
Posted

I've never posted anything to an online message board, so I hope I'm doing it correctly :-)

I think that I may have a gluten intolerance of some sort, but I'm not sure if it is celiac or not. I'd love to find out if my symptoms are similar to what anyone else out there has had, and what suggestions anyone has as to what my next step should be. Should I be tested, if so what tests, etc...

I have been on a gluten free diet for the past 1 1/2 years after suggestions from my husband that avoiding gluten might help my multiple sclerosis (MS) and stomach pain. I had already discovered that couldn't eat any dairy (including casein), sugar, onions, and garlic as the result of an elimination diet.

After starting the gluten free diet, I found that my emotions leveled off. I also found that my thinking was more clear and less "foggy". When I reintroduced wheat back into my diet as an experiment after about 2 months, I had stomach pain, mild facial numbness (similar to MS) and severe depression the next day and it really scared me. I seemed to feel better a few days later. After about 7-9 months of being gluten free, I mistakenly had a lot of wheat for dinner at a restaurant. That night I was in so much abdominal pain and it didn't heal completely for a couple of months.

Recently, I ate out at a fast food Chinese restaurant where I knew that the soy sauce probably contained wheat. I was feeling pretty good so I decided to take the plunge and eat it anyway. My stomach has hurt ever since. The pain is mainly in the upper center to upper right side, and is less when it is empty.

Another bit of info is that one of my cousin's daughters had autistic behavior, and once taken off of gluten and dairy, her personality completely changed. It seems to be from our side of the family rather than from her husband's side.

Thanks for your help!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

honestly it doesn't matter if it's Celiac or Gluten Intolerance, the end result is you treat both exactly the same, strict lifelong adherance to the gluten-free diet. You've self diagnosed yourself with the most valid diagnostic tool their is, dietary response. You know you need to be gluten-free, and you are also on your way to figuring out your other intolerances.

welcome to the crew!

SchnauzerMom Rookie
SchnauzerMom
Posted

It definitely sounds like you need to avoid gluten. If you feel better without it then avoid it. There is a lot of stuff out there to eat that doesn't have gluten. You don't have to feel deprived.

tummytroubles Newbie
tummytroubles
Posted
  • Author

Thanks for your responses :-)

I'm definitely going to stay on a gluten free diet. I wasn't convinced before that I might have to be concerned about small amounts of gluten. I thought it wouldn't make a big difference; especially since I may not even have celiac disease. For other intolerances I sometimes can have small amounts of the food without major consequences. I guess it must be different with gluten for me for some reason.

Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

sspitzer5 Apprentice
sspitzer5
Posted
Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

Sadly, the standard medical tests likely won't help in your case because you've already been gluten free for so long. To get the right results, you would have to reintroduce gluten for some period of time and then get tested. I haven't been willing to do this because I know I would be miserable. There are a lot of us in this boat.

The other option would be to do something like Enterolab. They use a stool test and can supposedly pick up gluten intolerance even if you aren't eating gluten. However, mainstream medical doctors don't recognize this test as valid yet. I tested positive with Enterolab. I had 2 biopsies and they were both inconclusive since I'd already been gluten-free for 5 months.

Bottom line is, listen to your body. If you don't feel well eating gluten, don't eat it. But, I do understand that people sometimes think you are crazy. I guess it's one of those situations where you figure out who your real friends are!

S

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • 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.