Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Whats Next


Murray

Recommended Posts

Murray Newbie

My Problems signs and symptoms and how I think I may or may not have celiac disease

At the age of 22 a very smart lady that I will soon be married to next year made me go to the doctor and find out why after almost every meal I was getting sick. (cramps, gas and very foul and half solid #2) This killed dating because I never wanted to leave my house in fear of getting sick. A problem I have to this day. I visited a gastro doc in Rockville, Maryland who on my first visit informed me he believed that I had celiac disease. He explained a little and gave me some reading to do and some blood tests. So I went the next day to get my blood work done.

A few days later I was contacted by the office and asked to make another apt. I did just that. When I went in that day I was very worried that the doctor was going to tell me I did not have celiac disease and it was going to be something so worse. Well that visit the doctor never said a thing to me. I talked to his aid who told me that some levels? (What levels) were elevated and they wanted me to have a biopsy, and to start a gluten-free diet. The diet I did however I delayed the biopsy at all cost.

A few weeks later while adjusting to this new diet I continued to cheat eating cheese burger and I had to have a donut or two. Having no reaction I called my doctor a quack and said no way to the biopsy. However in that time I got real sick and any movement in a car or on a train where I worked made me so sick I could not stand it. I contacted the doctor and 4 days later I was having my biopsy done. It came back negative. So the doctor would not code me with celiac disease. This causes a little bit of a problem. 1. you cant write of the food on your taxes with out it. 2. Whats the real problem.

4 years later I am still trying to stay on this diet however I find myself getting sick mainly after meals with tomato in it. But I can go get a double cheese burger Mac-D's and will not get sick at all.

Now lets say I go out to dinner (outback) get a gluten free meal. I still find myself getting sick. However sometime I think I worry so much about getting sick I make myself sick. Who wants to get sick away from home. No one.

I have been on the rice diet for the past 3 weeks as well as gluten-free and I am down 12 lbs. But wait I am still getting sick some meals just gas but some times its cramps and everything I talk about earlier.

Can anyone tell me what they think using there experiences, or can any one point me to a really good doctor in the Maryland area. I live on the shore but will run to Annapolis or Baltimore.


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



Celiac.com Sponsor (A8-M):



sfm Apprentice
My Problems signs and symptoms and how I think I may or may not have celiac disease

At the age of 22 a very smart lady that I will soon be married to next year made me go to the doctor and find out why after almost every meal I was getting sick. (cramps, gas and very foul and half solid #2) This killed dating because I never wanted to leave my house in fear of getting sick. A problem I have to this day. I visited a gastro doc in Rockville, Maryland who on my first visit informed me he believed that I had celiac disease. He explained a little and gave me some reading to do and some blood tests. So I went the next day to get my blood work done.

A few days later I was contacted by the office and asked to make another apt. I did just that. When I went in that day I was very worried that the doctor was going to tell me I did not have celiac disease and it was going to be something so worse. Well that visit the doctor never said a thing to me. I talked to his aid who told me that some levels? (What levels) were elevated and they wanted me to have a biopsy, and to start a gluten-free diet. The diet I did however I delayed the biopsy at all cost.

A few weeks later while adjusting to this new diet I continued to cheat eating cheese burger and I had to have a donut or two. Having no reaction I called my doctor a quack and said no way to the biopsy. However in that time I got real sick and any movement in a car or on a train where I worked made me so sick I could not stand it. I contacted the doctor and 4 days later I was having my biopsy done. It came back negative. So the doctor would not code me with celiac disease. This causes a little bit of a problem. 1. you cant write of the food on your taxes with out it. 2. Whats the real problem.

4 years later I am still trying to stay on this diet however I find myself getting sick mainly after meals with tomato in it. But I can go get a double cheese burger Mac-D's and will not get sick at all.

Now lets say I go out to dinner (outback) get a gluten free meal. I still find myself getting sick. However sometime I think I worry so much about getting sick I make myself sick. Who wants to get sick away from home. No one.

I have been on the rice diet for the past 3 weeks as well as gluten-free and I am down 12 lbs. But wait I am still getting sick some meals just gas but some times its cramps and everything I talk about earlier.

Can anyone tell me what they think using there experiences, or can any one point me to a really good doctor in the Maryland area. I live on the shore but will run to Annapolis or Baltimore.

The thing is, if you are still eating gluten occasionally (and it sounds like you are) then you are not giving your intestines a chance to heal. Then, when you eat something like tomato, which can be hard on your stomach, you react. Also, some people have delayed reaction to the gluten, so instead of getting sick right away, it can be a day or two later - and then how would you know?

Frequently someone newly diagnosed needs to stay away from processed foods, dairy, etc., simply because your system is so screwy that it can't handle those foods. Before I was gluten free it didn't matter what I ate - I got sick. I did not associate it with gluten because it wasn't specific to when I ate gluten. But when I stopped eating gluten - totally - I realized how sick I had been, all the time.

You won't know for sure unless you eliminate ALL gluten from your diet. It's not like lactose intolerance where you only react when you have lactose. Your digestive system becomes damaged by the gluten, so that it can't handle much of anything. Also, it takes time for your body to heal, so the relief isn't necessarily immediate.

But I have to tell you that your symptoms sound classic, so it's worth trying to really do the diet and see how you feel. I'm thinking you will be amazed at how good you feel in time.

Good luck.

Sheryll

Lisa Mentor

Well said!

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. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      6

      Vaccines

    2. - Scott Adams replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Opinions on my test results/symptoms

    3. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      6

      Vaccines

    4. - Scott Adams replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Opinions on my test results/symptoms

    5. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      6

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,841
    • Most Online (within 30 mins)
      7,748

    Alejandra Narciso
    Newest Member
    Alejandra Narciso
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Dawn, yes, once the genes that give the potential for the development of celiac disease are "turned on" so to speak, they will be on for the rest of your life. It is not something that is cured or comes and goes but something that must be managed. Eliminating major sources of gluten from one's diet is pretty straight forward but many don't realize the multitude of places and ways gluten is hidden in the food supply and sneaks its way into our eats. So, eating "lower gluten' is easy but attaining a consistently and truly gluten free state is much harder and requires diligence. I am linking this article that might be of help to you in that regard:  
    • Scott Adams
      PS -  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. You mentioned that your bowel movements may be a bit more regular, so this could be another indication of NCGS.    
    • Scott Adams
      You did not mention your age, but depending on how old you are it makes a big difference on how important it is to get a flu vaccine. 
    • Scott Adams
      Your situation is not straightforward, so it’s understandable why you’re seeking clarity. Your elevated thyroid peroxidase antibodies (TPOs) and thyroglobulin levels suggest autoimmune thyroid involvement, possibly Hashimoto’s thyroiditis, even though your thyroid function currently appears normal. The link between autoimmune thyroid disease and celiac disease is well-documented, but your celiac panel results are inconclusive, with only the deamidated gliadin IgA elevated. As you doctor correctly mentioned, this could indicate non-celiac gluten sensitivity (NCGS) rather than celiac disease, especially since you lack classic GI symptoms. However, the absence of improvement after four months gluten-free is notable. While some non-GI symptoms like fatigue and brain fog can take longer to resolve, the lack of progress raises questions about whether gluten is the primary driver of your symptoms. It might be worth revisiting the possibility of a biopsy (after a gluten challenge) to rule out celiac definitively, or exploring other potential contributors, such as nutrient deficiencies, other autoimmune conditions, or even dysautonomia, given your temperature regulation and energy issues. Have you had your thyroid levels retested since going gluten-free? If not, I would do that before resuming a regular gluten diet. It would be interesting to see if there has been any normalization in those levels while on a gluten-free diet.
    • Dawn Meyers
      Yes no gluten in my diet. I get so sick that I have to go to the ER for fluids and medicine. I was diagnosed in 2017 but was told I probably have had it my whole life. (Went to Mayo in 2019 to confirm diagnoses and address all other autommune issues ect.) Also intolerance to sugar alcohols and chicory root. Try to eat clean and stay away from processes foods. 
×
×
  • Create New...