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Newly Diagnosed

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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  • Recent Activity

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      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Hidden Gluten in distilled vinegar

      Take it easy! I was just prompting you for some clarification. In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution...
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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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