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

Bad Stomach Pains


simply

Recommended Posts

simply Newbie

Hi...

I've not yet been diagnosed with Celiac, although I'm pretty sure that I have it. I had no idea what it was until my doctor ran a blood tests for gluten antibodies a few weeks ago thinking that it may be the cause of a wide variety of poo problems.

Anyway, he let me know that one of the tests cam back as a weak positive, that I might have gluten sensitive enteropathy, and that I should see a gastroenterologist. (Note: I chose the two weeks before the blood test to do atkins...as a result, I had NO gluten during those two weeks - with the exception of a small amount of soy sauce.)

Anyway, while my doctor is out of town, I've been eating a lot of bread and pasta because everything I've read says that you should be eating gluten while they try to diagnose you...otherwise, everything comes up false negative.

Right now, I'm having unbelievable stomach pains....they are not really localized...instead they're pretty much all over. Also, my bones hurt, my hair is falling out, blah, blah, blah. The weird thing is that my symptoms are different before going gluten-free for those two weeks than they are now.

My questions:

1. Is it normal to have different symptoms after going gluten-free for two weeks.

2. How much gluten must I eat on a daily basis to make sure I don't get a false negative (couple crackers or a plateful of pasta plus a few slices of garlic bread)?

3. For how many weeks before the blood test must I be eating gluten? Before the biopsy?

4. Is it normal to be obese and have this thing? If it is possible, HOW?

5. Must you fast before taking the gluten anti-bodies blood test (the first time I took it, I had to because of some other blood work that was being done.)

6. Do you have to stay in the hospital to have the tube slid down your throat for the biopsy...or do you have to be in the hospital at all...do they give you drugs if you have a nasty gag reflux.

Yeah, I have lots of other questions, but that should be enough for now.

Thank you all so much...

Simply


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular
4. Is it normal to be obese and have this thing? If it is possible, HOW?
I would like to answer essay question number 4 please :D

Your body goes into a survival mode. Seeing as your body isn't getting nutrients(due to the villi flattening) your body starts storing fat. Thus you become obese over time. This doesn't happen to every Celiac, but does to some.

Hope that helps ya!!

-Jessica :rolleyes:

Aimee Newbie

From my understanding, gluten is found in alot more items than just bread and pasta, so even though you may have been adhering to an Atkins diet, you probably were ingesting *some* gluten of some sort. Its amazing the kinds of things I've already found that contain gluten... I'm new to this, but I've found it to be true so far... So you may not have been as free from it as it would seem, but maybe so.

To answer your questions as well as I can. I have had unbelievable stomach pains as well, even after going gluten free, they are still there. I have read it can take weeks to rid yourself of the side effects once on a gluten free diet. My symptoms dont always stay the same... like, my bones ached for months, then I became really gasey, etc etc. The abdominal pains seem to be the flavor of the month =) So I don't know if things would change in 2 weeks or not...

I don't really know how much you should eat to not get a false negative, to be honest. My doctor told me 2 weeks ago that I could begin the gluten free diet even though I was having my biopsy two weeks later, and he said the damage would not reverse that quickly. He told me he even found enough damage to confirm a patient of his 6 full months after they went gluten free. Your doctor can answer these questions for you when you go see them.

I am slightly overweight (15-20 pounds?), I suppose, though in the last month and half when things really got bad (to the point of not eating anything), I began to lose weight (25 pounds and counting). I have read that some people don't react by losing weight. I suppose because some people don't get diarrhea and flush things (I dont), and even though the nutrients may not be being absorbed, doesn't mean the fat is? Good question. Ask your doc and let me know what s/he says =)

I didn't have to do anything before having the blood test done. Matter of fact, I didn't know what he was testing for... he just told me he wanted to do more labs.

I just had my upper endoscopy done on Monday. I have had one done before to find an ulcer, and both experiences were the same (diff doctors, hospitals, etc). I went to the GI Lab at my hospital, they hooked up an IV, put me to sleep just using sedation (keeps you out about 30 minutes or so), and they did the procedure. I felt nothing, remember nothing. I do know they spray your throat with something to numb it in order to combat that gag reflux =) My docs office had me watch an information video on the whole thing before going through with it. There are people who opt not to be sedated, I didn't take that route (though my insurance co believes it to be elective and doesn't pay for it. Money worth spending as far as I'm concerned). Once you're back awake, they let you go home. I went home and slept another 6 hours or so. Piece of cake =)

I hope that helps some... My best advice is to see a doc. Do some research yourself, arm yourself with questions, and see a doc about it all. =)

  • 2 weeks later...
simply Newbie

Well, I was able to see the gastroenterologist today. She was very friendly (what a relief) and she seemed to know what she is doing. She is a faculty member at the University of Michigan medical school, so I'm hoping she's clued in.

Anyway, she said that I probably didn't have celiac despite my symptoms because most people with Celiac are underweight, and I'm 100 pounds over. However, she ordered the proper tests anyway just to be on the safe side - it is an easy test to run, and if that is the problem, we really ought to know now.

So, now I have a week to wait. That's fine. I'm patient.

If I don't have it, I'll need to get a colonoscopy to find out whether I have micro ... colonitis or something like that. I'm not sure if I caught the name quite right.

Later.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.