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

New Here :)


baylees-mummy

Recommended Posts

baylees-mummy Newbie

hi everyone, my name is tamika and i am 20 years old. i have been having symptoms since the birth of my child 1 year ago... they started out mild and didnt happen all the time but they have slowly gotten to the point that i feel sick all the time. i will start out with my symptoms..

stomache cramps

moderate nausea

thick narrowing feeling in my throat (HAS ANYONE ELSE HAD THIS?)

on and off loose stools that float

bloating which is worst at night

loss of sex drive

irritability

mood swings

breathlessness sometimes

feeling of something popping or moving in my abdomen

weight loss

extreme fatigue

cravings

extreme hunger

GERD

there are probably more but i cant think of them at the moment. i knew right from the start of my symptoms that something wasnt right but was to afrid to go to the dr about it or think about it.. i thought from the nausea which is the biggest symptom that something was really wrong with me. but.... i have now been on a gluten free diet as of yesterday and hey guess what.. no nausea and no cramps. i am waay too afraid to go back on the gluten as the nausea was so bad. is there any other way of getting a diagnosis? also has anyone had the same symptoms as me? my partner saw a tv show on extra the other night and immediatly thought that it was exactly what i was going through. i am finding it very hard to eat the gluten free products also they are so yuck and i dont really like vegetables and i cant live off fruit.. what do you guys eat? i cant afford to loose any more weight at the moment i am already a very skinny figure :( ... any ideas are very much appreciated.

thanks tamika xxx


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



Celiac.com Sponsor (A8-M):



confused Community Regular

You could very well be celiac, the birth of my second son is what triggered my celiac 6 yrs ago, but only found out 10 months ago.

When you are only gluten free there is so much out there that u can eat that is mainstream food. You can have any fresh meat and fish, you can have all veggies and fruits. You can use corn toritallas for wraps and breakfast burritoes. Almost all breakfast food is gluten free, just have to read labels for bacon and sausage. You can have lara bars for snacks, many chips are gluten free.

You can be tested threw enterolab if u dont want to go threw doctors and they can tell you if u are gluten intolerant and carry the celiac genes.

If you would be gluten free and do blood work you could very easily get an false negative.

Or you can just stay on the gluten free diet and see how you feel, but you have to be very strict about it.

paula

mn farm gal Apprentice

The thing to remember is if you do want the blood test done you need to stay eating gluten until the test is done. I don't think one day will throw it off but a few days will. It just depends if you are the type of person that needs a specific reading to confirm that or not. If not you can just do the diet and if you feel better then stay on it. Which is what I did, I was gluten lite for a couple of years before I even heard Celiac, so my test came back inconclusive.

CMCM Rising Star

Boy, you've definitely got a lot of things that are associated with celiac disease.

If you are still eating gluten, get the test right away. But remember if it is negative, it doesn't necessarily mean you don't have a potential problem. Since you have symptoms that bother you, you want to clear them up.

You could then get a gene test....I guess you can get them various places. I got one from Enterolab, costs about $169, easy to do. That would reveal whether or not you have a celiac gene and you would then know whether or not you are predisposed to celiac disease.

Finally, be seriously gluten free and give it a month or two to see if your symptoms go away. If they do, you'd want to be gluten free so you feel good, regardless of anything else.

Remember that 40 years ago doctors thought 1 in 10,000 people had celiac disease. Now the figure is 1 in 133, but other doctors think it's more like 1 in 85. And that's just celiac disease. Some doctors think virtually everyone is gluten sensitive to one degree or another, and that probably no one should eat much, if any gluten. Our digestive systems were not designed to handle gluten, which it interprets as a poison.

You're lucky if you figure all this out at 20....I didn't until 56, although in retrospect, if I had the knowledge and info that is out there today, I could have figured it out at 20 because I had various problems all the years until now. In the end, eating wheat/gluten is not worth it. Wheat is addictive, but once you get away from it, it loses its hold over your eating.

CMCM Rising Star
Boy, you've definitely got a lot of things that are associated with celiac disease.

If you are still eating gluten, get the test right away. But remember if it is negative, it doesn't necessarily mean you don't have a potential problem. Since you have symptoms that bother you, you want to clear them up.

You could then get a gene test....I guess you can get them various places. I got one from Enterolab, costs about $169, easy to do. That would reveal whether or not you have a celiac gene and you would then know whether or not you are predisposed to celiac disease.

Finally, be seriously gluten free and give it a month or two to see if your symptoms go away. If they do, you'd want to be gluten free so you feel good, regardless of anything else.

Remember that 40 years ago doctors thought 1 in 10,000 people had celiac disease. Now the figure is 1 in 133, but other doctors think it's more like 1 in 85. And that's just celiac disease. Some doctors think virtually everyone is gluten sensitive to one degree or another, and that probably no one should eat much, if any gluten. Our digestive systems were not designed to handle gluten, which it interprets as a poison.

You're lucky if you figure all this out at 20....I didn't until 56, although in retrospect, if I had the knowledge and info that is out there today, I could have figured it out at 20 because I had various problems all the years until now. In the end, eating wheat/gluten is not worth it. Wheat is addictive, but once you get away from it, it loses its hold over your eating.

CarlaB Enthusiast

First, I would get back on gluten and get properly tested if you want to know for sure.

I would also look into other things -- bacterial dysbiosis is one.

I had that gurgling, moving, popping sensation .... I knew I had bacterial dysbiosis and found a product called Humaworm (www.humaworm.com) that gets rid of bad bacteria, parasites, amoeba, protozoa, etc. in the intestine .... much to my shock, I had a rather large tapeworm! Since getting rid of the tapeworm, no more moving, gurgling, etc. in my stomach! Here's an article on them: Open Original Shared Link

baylees-mummy Newbie

thanks everyone you have all been a great help to me. may i ask what enterolab is and how it works? also i live in australia... do they have that test over here? to me the diagnosis really isnt as important as staying nausea free so i suppose i will stay away from gluten for now. some interesting info.... you can actually get a vanilla formula from the chemist with all the vitamins and fats etc. that you need in it and it is GLUTEN free so i am having one of those a day and eating my fruits veg and meat to hopefully gain back some of the weight i have already lost.. tastes quite good too btw. i dont feel as lost as i did before now that i have found you guys so thank you all so much. tamika xxx :D


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



Celiac.com Sponsor (A8-M):



nutralady2001 Newbie

Hello Tamika there are a few of us in Australia Enterolab is USA I will pm you. Also look further down the index page at the "International Room" some of us are here

Open Original Shared Link

in an Australian/NZ thread

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.