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

All The Symptoms But Negative Blood Work...


~TheFanny~

Recommended Posts

~TheFanny~ Newbie

Hello everyone, I am a 29 years old Female, and not getting any younger OR healthier. I actually started having all sorts of symptoms when I was 23. The doctor just said that I had IBS... Typical I know.

Long story short is that I was super healthy, looked great in a bikini, and now, 4 yrs later, the weight gain slowly started, I couldn't lose it, I had what I thought was bad IBS-A, and thought that was the problem. Well now I have gained a total of 92 lbs (I'm 5' 11") and all sorts of symptoms.

-diarrhea, headaches, back aches, major knee joint pain, fingers are sore, feels like my whole body aches, numb shoulders, hands and feet, stomache pain after I eat certain foods, bad brain fog, super SUPER tired all the time but can't sleep at night, anxiety and depression, stomache bloated to look 5 months pregnant... I can't think of anything else at the moment...

But a few people including my husband got worried because my health was bad and I gained so much weight and even when I dieted and exercised I didn't lose anything. So my husband was worried. I got to doing some research and kind of self diagnosed myself. So I talked to a lady I know who has celiac disease and she gave me a lot of tips and advice.

Well, since I didn't have health ins. I decided to just go off gluten and see if it helped... Well after a few days I noticed some change... I didn't have to run to the bathroom after 5-30 mins after I ate! So, once I got ins. I went to my Dr. For a checkup and told him what I had done. He said it sounds like I have at least a gluten intollefance and he wanted to try a blood test... I said I was off gluten for 3 weeks and the blood work will most likely come back negative.... He said he wanted to try anyway. So we did and I was right. Heathen asked if I wanted to do the scope and I said no.... Mainly because I don't want to start eating gluten just to get the best results... I would like to know but at the same time, I have tohavesome sort of allergy to it or I wouldnthavebeenfeeling a bit. Better already...

I guess I am wondering,should I still do the scope even though I have been off gluten for 3 weeks?

Anything helps! :)


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

As long as you don't need an "official" diagnosis, then I would just keep doing what you are doing. If you feel you would need results for something in the future, you might want to do it now; it sounds like going back on gluten after being off it makes reactions so much worse!

Best wishes to you!

IrishHeart Veteran

If you want a Celiac diagnosis, you will have to go back on gluten for a few months and have a biopsy.

Just doing a "scope" is not a diagnostic tool. You need a biopsy.

Celiac is not an allergy. That is a misnomer.

It is an autoimmune disease.

You can have a wheat allergy, but that is a different mechanism.

Your symptoms are significant, so it is worth checking out.

You could also have NCGI.

squirmingitch Veteran

The scope & biopsy won't be any good just like the blood tests b/c you have been gluten free. So, like IrishHeart says, you would have to go back to eating gluten.

Do you intend to have children? Do you have children? Children would be the only reason I personally would want an official dx. And the reason for that is to help get your children dx'd IF they turn up with celiac disease also. And you would want a dx for children b/c it makes a big difference in school, college & the military as far as them being protected b/c they would have an official dx.

Pac Apprentice

If you can get the scope (+biopsy) done soon, then I would do it, even on gluten-free diet. Negative results don't mean you cannot continue eating gluten-free. Intestine healing might take up to two years so after a month gluten-free you still have some chance, especially if your doctor seems to be aware that you might get false negative results due to being alreagy gluten-free.

I only got scoped 6 week or so after going gluten-free and there was still some minimal damage visible. I got diagnosed with celiac based on that and my reaction to gluten-free diet.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,004
    • Most Online (within 30 mins)
      7,748

    Daffodil
    Newest Member
    Daffodil
    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

    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.