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Not Diagnosed Yet

Tiffy

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Tiffy Newbie
Tiffy
Posted

Hi, I just joined this forum because I believe that I have celiac disease/gluten intolerance. I have been on the gluten free diet for more than three months and I cannot even describe the joy I feel because for the first time in my life I am not suffering from stomach pains and other problems. I took a blood test after being on the gluten free diet for three months, but the test results were negative. I was wondering if anyone could tell me if the symptoms that I suffered through before the gluten-free diet sounds like celiac disease/gluten intolerance.

Extreme weight loss

stomach and intestinal pains

bloated stomach almost all the time(would get worse after I ate, esp. if I ate things with wheat)

-one time it was so bad that I could barely breath and I fainted

constipation(this is embarrassing but sometimes I couldn't go for more than a week!)

Rapid heart beat after I ate things with wheat in it

Joint pains

headaches

always feeling tired

lost appetite (but sometimes I would be really hungry, so even after I ate I would still feel hungry)

muscle pains

muscle spasms

There were probably a lot more that I can't think of right now

These are most of the symptoms I had, I feel so much better now. I did on accident have a piece of pasta in a soup at the dining hall at the end of last week. For probably 4 days I felt pretty sick, but I am a lot better now. I feel so happy that I finally found out what was wrong with me for pretty much my whole life. Thank you for taking the time to read this and if anyone could tell me if the symptoms above sound like celiac disease/gluten intolerance that would be great.

-Thank you!

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Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

OnMyWayToPA Newbie
OnMyWayToPA
Posted

I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Tiffy Newbie
Tiffy
Posted
  • Author
Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

Hi, thank you for the response.

GlutenWrangler Contributor
GlutenWrangler
Posted

Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Tiffy Newbie
Tiffy
Posted
  • Author
Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Hi GlutenWrangler, thank you for the response. It is nice that there are others out there who understand and are supportive.

-Tiffy

Tiffy Newbie
Tiffy
Posted
  • Author
I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Hi, I hope that you get better soon. I believe that one of the things that really helped me was eating plain yogurt three times a day. I feel that the probiotics from the yogurt really help not only the stomach and the intestines but also your whole body. The calcium from the yogurt is also essential for not only your bones but also your intestines.

-Tiffy

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Contact them.
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