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

Could It Be Celiac?


lilypad23

Recommended Posts

lilypad23 Explorer

This is really embarrassing, but here goes. For the past two weeks, I have had really bad diarrhea nonstop. At first I thought it was just a stomach virus, but it won't go away and I don't really have all the symptoms of a stomach virus. I still have a huge appetite, I'm not vomiting, and I haven't had fever at all. I also have had stomach problems basically my whole life. I either have diarrhea, weird bms, painful gas and bloating, or I'm constipated for a week or more at a time. I'm also always extremely tired, I feel weak most of the time, I'm always really hungry, my skin itches for no apparent reason, and sometimes I feel like I'm kind of in a fog. I've been to the doctor, but I've never been tested for this. All of my bloodwork always comes out well and they tell me just to eat right and exercise and I'll be fine. So, I've done that. I went on a whole grain diet and started exercising but things just seem to be getting worse rather than better. Today, I haven't eaten anything with wheat and I feel a little better. I still have diarrhea but for most of the day I didn't feel as weak or as tired as usual. Anyways, any replies would be greatly appreciated.


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



Celiac.com Sponsor (A8-M):



GFhopeful Rookie

not an expert by any means as I'm new to all of this too - but it sounds familiar. i had great bloodwork but became progressively more "off" until I was really really sick. I never had any allergy issues at all and then this. I would suggest to pursue this further with your doctor, maybe it's a food sensitivy, possibly wheat or another, that has crept up on you. I just felt like sometihng wasn't right before discovering this.

Lisa Mentor
This is really embarrassing, but here goes. For the past two weeks, I have had really bad diarrhea nonstop. At first I thought it was just a stomach virus, but it won't go away and I don't really have all the symptoms of a stomach virus. I still have a huge appetite, I'm not vomiting, and I haven't had fever at all. I also have had stomach problems basically my whole life. I either have diarrhea, weird bms, painful gas and bloating, or I'm constipated for a week or more at a time. I'm also always extremely tired, I feel weak most of the time, I'm always really hungry, my skin itches for no apparent reason, and sometimes I feel like I'm kind of in a fog. I've been to the doctor, but I've never been tested for this. All of my bloodwork always comes out well and they tell me just to eat right and exercise and I'll be fine. So, I've done that. I went on a whole grain diet and started exercising but things just seem to be getting worse rather than better. Today, I haven't eaten anything with wheat and I feel a little better. I still have diarrhea but for most of the day I didn't feel as weak or as tired as usual. Anyways, any replies would be greatly appreciated.

Welcome to this site. Caraline, what type of blood work has your doctor done on you? A metabolic panel to check deficiency?

Since you have found this site, I assume that you have a concern regarding Celiac. Celiac Disease is an intolerance from the proteins found in wheat, barley, rye, malt and most oats Contact you doctor and ask that he/she run a full Celiac Panel and get the blood work done, and then go from there.

If you feel immediate results from not eating "wheat" you may have a wheat allergy. Wheat is only a portion of Celiac Disease.

Oh so many of us have been diagnoses with IBS (the last meaning BS). By average it takes a Celiac person 11 year to be diagnoses. So, you are in good company.

If you do consider the full panel testing for Celiac, you need to continue with a full gluten diet. This will ensure a more accuracy in testing.

(btw - poo is a common topic here, with much interest :( )

lilypad23 Explorer

Thank you guys so much for your replies. I really appreciate them.

Unfortunately, I can't afford to get the test done right now. I did the gluten free diet for four days though and I was feeling so much better. My stomach problems went away after two days and I had a lot more energy. But, then, today, I ate some stuff with gluten in it and I got really really sick. So, I think I'm going to just stick to the gluten free diet and if I get sick again, then I'll get checked. I'm really broke so I just can't get the test right now.

Belinda Meeker Apprentice
Thank you guys so much for your replies. I really appreciate them.

Unfortunately, I can't afford to get the test done right now. I did the gluten free diet for four days though and I was feeling so much better. My stomach problems went away after two days and I had a lot more energy. But, then, today, I ate some stuff with gluten in it and I got really really sick. So, I think I'm going to just stick to the gluten free diet and if I get sick again, then I'll get checked. I'm really broke so I just can't get the test right now.

Welcome to the board Caraline, :)

And u sound like a duplicate of my son all through his child hood <_<

It took them til he was so skinny and white complected low blood count, passsing out after BM and totaly fatigued he missed 88 days of school :(

But the first blood draw was celiac disease positive and like Momma Goose said u have to stick with the nastey stuff to get a post. reading or U could just skip all the reg doc's and go to a good GI doc like son did :)

We r having a gene test done on hubby cuz he won't do the Gluten ever again (he almost lost a 17 year job over this figuring out wht was wrong)

So my heart goes out to ya :)

I know from first hand experiance this can be long and hard to figure out :(

And we too are on the poor side so it is quite expensive to eat right let alone find out the DXD :huh:

Good Luck to you in your quest and wish you well :)

Belinda

lilypad23 Explorer

Thanks for the reply Belinda. I've thought about the gene test, but I'll have to wait a while for that. That's good that your husband figured out what it was before he lost his job though. I've had to take a lot of time off of work because of this and I'm always scared that I'm going to lose my job. I'm really glad that I've figured out what it is though and now I can finally start healing.

darkangel Rookie

Be aware if you're having problems with gluten, you may also have issues with dairy. You might want to try eliminating it for a few days, too, to see if you don't continue to improve.


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



Celiac.com Sponsor (A8-M):



lilypad23 Explorer

Thanks for the info, darkangel. I think I'm going to give up dairy and soy for a while just to see how I feel and then work them back into my diet after a while.

Guhlia Rising Star

Be forewarned that if you go completely gluten free and then later on decide to get an official diagnosis you will have to do a gluten challenge. This means that you'll have to eat a fair amount of gluten daily for months (I think the recommended length of time is four months, but I'm not sure on this). Can you imagine how sick that could make you? My advice is if you're planning on ever getting tested, now's the time to do it. Perhaps you could go to a free clinic at a local city hospital? However, if you really noticed a huge difference after being gluten free for only a few days, perhaps you don't need an official diagnosis to force yourself to stick with the diet. Some people do, some people don't. Either way, good luck.

lilypad23 Explorer

Honestly, sticking with the diet isn't that hard so far. I feel so much better that its like I don't really miss what I was eating. I mean, I'd like to have it on paper just to have it, but I know that my body just can't tolerate gluten. The reaction I had last Sunday to it was horrible and I hadn't felt that way since I stopped eating it the first time and since Monday I've been fine. I'm just glad that I found these boards and other websites because its really helping me in figuring things out.

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. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    2. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    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

    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
×
×
  • 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.