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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,633
    • Most Online (within 30 mins)
      7,748

    Sandra Lene
    Newest Member
    Sandra Lene
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • 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.