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

Input Greatly Appreciated

JOwens

Recommended Posts

JOwens Newbie
JOwens
Posted

Hello,

I've been browsing these forums as a guest for a few weeks now, and have recently started on a gluten-free diet to try to help some of the many symptoms I've been facing recently. I thought I would post with some of my background to see if any of you have some input or insights - it would be much appreciated.

Quick things:

25 years old, male

Canadian

No digestive issues prior to a year ago

About a year back, I started having semi-frequent D (about 40-50% of the time), and a lot of urgency to go after eating (usually within 30-60 minutes). I didn't have a physician at the time (Mine retired), so I didn't think too much of it and blamed it on my relatively poor eating habits.

Then, one day at the beginning of November, 2007, I started having pretty bad acid reflux type symptoms (I would get a really sore throat, and it would actually hurt the muscles in my neck and back) as well as gas, nausea, and early fullness. This happened after pretty much every meal, but especially at dinner time. I wasted a few months going to clinics (tested for Mono, Strep, etc) before I found a new physician, who determined it to be stomach / GI related. I went on Nexium for a month, followed by Zantac 150 for a few weeks as well, neither of which helped at all. They did blood work, tested for H Pylori, etc, all negative.

Throughout this time, I had been continuously losing weight (partially from a lack of calorie intake, as I got full so quickly). About a month and a half ago, I eliminated all milk/dairy products, and stopped eating wheat as well (I didn't understand what celiac was at the time, and didn't realize the number of "hidden" gluten sources, ie: the malt used in Rice Crispies). About three weeks ago, I started having D several times a day, and found myself getting dehydrated, which prompted me to head to the emergency room. The doctors performed the blood antibody test for Celiac, which came back negative using their reference ranges. I started a strict gluten free diet using the info I found on this site and others like it - just in case.

Another week and a half later, I ended up back in the hospital again for extreme fatigue, continuous lower abdominal pain, etc. They performed an Endoscopy, which showed Villi damage consistent with celiac (no hiatal hernia, ulcerations, gastritis etc - upper GI was quite good); however, when the biopsy came back, this too was Negative.

At this point, I have been gluten free (strictly) for about 3 weeks, dairy free for about 1.5 months. I believe that the antibody and biopsy could have been false negatives, given that my gluten intake was quite low when I had the antibody test, and I was on a strict diet for a few weeks when I had the biopsy. I'm maintaining the gluten-free diet at this point, because I believe it can't hurt!

The problem is, that there hasn't seemed to be ANY positive effect yet. In fact, my Acid-Reflux type symptoms (this could also be from low acid, I've read) haven't improved at all. At the moment, the only things I can keep down that don't cause me to be immediately full and in pain are plain eggs, cooked carrots, and grape juice (ie: things that are easy to digest). I'm going to a naturopathic doc in a few days to check for other food allergies; the one thing I haven't tried to eliminate yet is Soy, although I barely eat any of it (my diet has consisted of potatoes, vegetables, lean meat and rice for months, to try to control the reflux, although I've been eating various cereal products, rice milk, etc throughout the process before I became gluten-free).

I'm suspecting another food allergy, bacterial overgrowth, or something along those lines...

At this point, I've lost about 55 lbs, and am concerned about my caloric intake. I still intend to be gluten-free, celiac or otherwise, but I'm wondering if anyone else has experienced similar issues when they started their "healing" process? Any input or suggestions would be appreciated!! :)

Thanks!

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

Celiac.com Sponsor (A8-M):


scotty Explorer
scotty
Posted

SOY....

JOwens Newbie
JOwens
Posted
  • Author
SOY....

Hmm, soy?

I've been considering eliminating it from my diet for a few weeks, along with everything else, and see if it makes a difference. At the moment I'm willing to try anything...

Darn210 Enthusiast
Darn210
Posted

Feeling full after very little food and acid reflux are symptoms of gastroparesis. You may want to google that and read up to see if anything else about it fits.

How sure are you of the food that you think is gluten free? Rice Dream brand of Rice Milk is NOT OK.

Also, check for cross contamination. Are you using scratched up teflon/coated pans? Old cutting board? Old Strainer? Jars of condiments (didn't sound like you were using any) from pre-gluten-free use that may have crumbs in them?

JOwens Newbie
JOwens
Posted
  • Author

I'm quite the analyzer, so I've googled all my symptoms many times and yes, Gastroparesis is something that seems to fit. I've brought it up to my family doc before, but this was prior to the Gastroscopy and so he didn't take it into consideration.

I've heard that this can be the bi-product of Celiac (damage to the small intestine causes food to exit the stomach more slowly than usual). I'm not entirely sure how to deal with it at this point, but I'll bring it up again and see if I can get any input from the doctors.

I'm positive the food I'm eating is gluten-free, as I've had some good advice around this (my grandmother takes care of my grandpa and aunt, both of which have celiac diagnoses - one of the reasons why I'm sticking to the gluten-free diet). The old cutting-board, pan etc idea isn't one I had thought of. I guess it's time to go shopping!

PS: I just double checked, and the multivitamin I started taking in November after this started contains Soy from a variety of sources. So I've been having Soy reintroduced every day - interesting. Although it says "Gluten Free" right on the front.

Darn210 Enthusiast
Darn210
Posted

If you're a googler, then you've probably already seen this . . .

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

which just adds more weight to the soy theory.

If you were mostly gluten free at the time, then your blood test and biopsy could have been affected.

JOwens Newbie
JOwens
Posted
  • Author
If you're a googler, then you've probably already seen this . . .

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

which just adds more weight to the soy theory.

Yep, I have seen that. And I agree about the soy idea - going to be vigilant around that for the next few weeks (and will likely request an allergy test from the naturopath as well).

If you were mostly gluten free at the time, then your blood test and biopsy could have been affected.

Makes sense.

Thanks for your input thus far, it's been valuable. As you can tell, I've been checking this post fairly frequently (I'm working from home today, after a particularily nasty bought of reflux yesterday).

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

Celiac.com Sponsor (A8-M):


Darn210 Enthusiast
Darn210
Posted
I've heard that this can be the bi-product of Celiac (damage to the small intestine causes food to exit the stomach more slowly than usual). I'm not entirely sure how to deal with it at this point, but I'll bring it up again and see if I can get any input from the doctors.

This was supposedly the case with my daughter. She was diagnosed with celiac disease and gastroparesis about a week apart. However she was also on an antacid at the same time and I wondered if that actually was the cause for her slow digestion. The acid reflux appears to be a celiac symptom as that is what happens when she is glutened. Are you still on the antacid? If it is not helping you at all, have you tried stopping for awhile to see if the gastroparesis is better?

JOwens Newbie
JOwens
Posted
  • Author

I'm not on any antacids regularily (to cause gastroparesis).

I've taken tums a few times, but then looked them up online and found out that they may contain gluten (ingredients can't be verified).

I've read that Rolaids are gluten-free, so I might pick up some of those instead. Although I've been trying to avoid using any antacids anyways, because they don't seem to help much if at all.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748
    JMF
    Newest Member
    JMF
    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.