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Bastet

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Bastet Newbie
Bastet
Posted

I am so glad I found this forum! I have been reading for about a week or so and finally joined.

I was diagnosed with Celiac disease on May 12. I am a little confused.

I have always had a "bad" stomach. Years ago I was diagnosed with gastritis found during an edoscopy. I learned to avoid things that gave me a stomach ache and got along pretty well. The weird thing is that my "go to" foods during attacks were plain pasta and white bread. I never noticed any symptoms from eating those things.

Fast forward to the end of January 2009.... I had a horrible stomach attack. The pain was intense, but got better after vomiting. The odd thing was that I threw up food that I had eaten the day before. I was actually crying and moaning from the pain at my Doc's office. He sent me to the emergency room. They found nothing wrong and sent me home after some morphine. I figured it was a fluke and went on with my life.

A month later...another attack with the pain and vomiting plus diarrhea. I did not bother with the emergency room this time. I just went to my regular Doc the next day. He referred me to a GI Doc. He set me up to have an EGD and colonoscopy right away. I am a cancer survivor. I was sure the tests would show radiation damage or something. Nope! Everything was good except my small intestine. The biopsy showed Celiac disease.

I have been on the Gluten free diet ever since (after one last binge at Applebee's on May 12). Anyway, I don't feel much different on the gluten-free diet. My husband says my anxiety has gotten much better. Who knew that my horrible anxiety could be caused by something like gluten?

Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

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GottaSki Mentor
GottaSki
Posted
Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

Symptoms vary, but endoscopic biopsy is the gold standard of Celiac Diagnosis. If you have eaten gluten your whole life it stands to reason that it will take time for your body to heal. I'm just over a few months gluten-free after nearly 44 years of gluten. I see some improvement, but not much yet...the bloating has improved. About 3 weeks to a month in I became very frustrated but read many posts that indicated the younger the person at diagnosis the quicker the recovery...I'm still hopeful for more improvement as the weeks go on.

Here is a great youtube of a video produced at UCSD's Celiac Center. It is long (over an hour) but helpful.

Open Original Shared Link

Welcome!

FMcGee Explorer
FMcGee
Posted

I've only been gluten-free four days longer than you (I also had the blood test and endoscopy come back positive) and don't feel miraculously better overnight, either. A lot of people do, according to what they've posted on the internet, but I don't. I, too, have felt my anxiety decrease, and the bloating has gone down a little bit, but I'm waiting for that energy bounce-back and for my stomach to quit being annoying. Yesterday I resolved to be patient; this is easier said than done. Keep in touch, and here's hoping we both get that recovery we keep hearing about soon!

ang1e0251 Contributor
ang1e0251
Posted

Remember each person's symptoms are unique. Don't expect there to be a certain set of symptoms that everyone should have identically. That's why so many of us go years without dx, our dr's think each person with celiac disease should look and act the same. Some have no symptoms but still are having their insides waste away.

You do have some symptoms and those are your indicators. You may retain those same ones over time or become more sensitive and have other feelings. This disease just isn't cut and dry.

As far as the energy boost, you could try the sublingual B12. It really boosted my energy and brain power too.

Bastet Newbie
Bastet
Posted
  • Author

Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Tra cy Newbie
Tra cy
Posted
Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Well said...bloating and brain fog!!! 4 weeks gluten-free and 3 episodes. I am assuming I am still learning to watch ingredients carefully.

It is not worth taking chances because I loose a whole day.

Tra cy

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

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

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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