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


SchnauzerMom

Recommended Posts

SchnauzerMom Rookie

I just joined today. I have been reading and learning here for several weeks. I have never been diagnosed with celiac or gluten intolerant. The main reason is because I can't afford insurance and the price for the tests would have to come out of pocket and my pocket doesn't hold much. My DH and I both have problems that the doctor called IBS. It was my DH's idea to learn about celiac disease. We have been on a gluten free diet for about 2 weeks now and both of us can tell the difference. I get really bad acid stomach when I eat something with gluten. Yesterday I ate some candy that had gluten and was sick most of the evening. It may be inconvenient but the diet is worth the trouble just to be free of pain. A book I have said to concentrate on what you can have instead of what you can't. I have been doing some baking with alternative flours and have gotten some really good results. Our eating the last couple of weeks has been the healthiest in years.


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



Celiac.com Sponsor (A8-M):



Corkdarrr Enthusiast

Welcome to the forum! I'm glad you found us and if you have any questions, don't hesitate to ask. Odds are that someone here has already wondered the same thing and would be happy to help.

Courtney

jerseyangel Proficient

Well hi and welcome to the board! :D

Looks like you and your husband figured out for yourselves that you have problems with gluten. The positive response to the gluten-free diet is a valid diagnostic tool--it's great that you figured this out, and you now can start to feel better and be healthier in the long run.

Continue to read through old posts for tons of ideas--and I hope you'll jump in and post often! :) Let us know if there's any way we can help.

TinkerbellSwt Collaborator

Hello and welcome! You will find lots of answers to many questions on this board. If you have any yourself, please dont hesitate to ask. This is the best group of people I have come across.. someone is always around to help.

I am glad that you both just decided to stick with the diet without those test results. You will find quite a few people on here have done the same thing. Keep up the good work!!

Guest nini

welcome welcome! and yes positive dietary response is a very valid diagnostic tool and I'm glad you guys have figured out that gluten is a problem for you.

If we can help you with any recipe conversions or product questions, never hesitate to ask!

Canadian Karen Community Regular

Hi and Welcome!

I'm glad you found us - there are sooooo many here who have discovered the benefits of gluten-free living without actually going through the gauntlet getting an official diagnosis. The best way to determine if you have a problem with gluten is by applying the diet anyway, as both bloodwork and biopsies have a high rate of false negatives.....

Any questions you have, no matter what it is, just go ahead and ask us, and we'll try our best to help out. There's a great bunch of really knowledgeable people here who will chime in......

Again, Welcome!

Karen

lonewolf Collaborator

Welcome! Sounds like you're on the right track. Good for you to take your health into your own hands! Please stick around and feel free to ask lots of questions.


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



Celiac.com Sponsor (A8-M):



zachsmom Enthusiast

nice to meet you .

dlp252 Apprentice

Hello and welcome! Dietary response is just as valid as other methods! My GI doctor (mainstream) doesn't agree with the Enterolab testing, but he can't argue with a positive dietary response!

spunky Contributor

Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

Gamecreature Rookie
Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

I'll second that. I've just begun my diet (gluten-free for 5.5 weeks now) and while my body is still healing, the difference is great. A lot of the stuff I took for granted before has now ceased to be a problem. Good luck. Oh, and be sure to check out the "newbie survival kit" in Nini's sig.

Creative-Soul Newbie

Hello and welcome! Like you I couldn't afford all the "official" tests, and my wonderful doctor agreed with me that my dietary response was enough proof that I was gluten intolerant/celiac. There are wonderful people here, and you have a safe place to gain support, get advice and vent when you need to!

SchnauzerMom Rookie

Thanks everyone for the great welcome. I have already learned a lot here. I think this is a great place! :D

Guhlia Rising Star

Just saw your post now. Welcome welcome welcome!!! :D

bearly Newbie

I too was just diagonised on the 2nd of Oct. Has been a really rough month getting use to the diet with no improvement. Was back to the Dr. today and even with a positive bisopy he thnks there may be something else going on. Also did some research and found the protonics i'm on is not gluten free and maybe that is part of the problem. Does anyone have any ideas or suggestions. Am open to any help I can get right now.

Ursa Major Collaborator

SchnauzerMom and Bearly, welcome to this board!

Bearly, you will get a much better response if you start your own thread to ask your question.

But if your probiotic has gluten, it is definitely a huge problem, and you need to switch to one that is gluten-free to get better.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,608
    • Most Online (within 30 mins)
      7,748

    lorrasmama
    Newest Member
    lorrasmama
    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

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.