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

Iga Deficiency, Lactose Intolerance, Erosive Gastritis

Elcamino

Recommended Posts

Elcamino Newbie
Elcamino
Posted

Hi all,

I've been reading your posts for quite a while now. I was given the celiac panel about 6 weeks ago. Evidently, the results are meaningless because I am IgA deficient (they did conduct a total IgA for me). GI, to exclude Celiac and positively diagnose me with IBS, took multiple duodenal biopsies last week. Only positive finding at the time of the exam was erosive gastritis; still waiting on biopsies on celiac and cause for the erosive gastritis.

I am also severely lactose intolerant and have been for most of my life. Everytime I google IgA deficiency and lactose intolerance, Celiac-related websites pop up. I've also read that a minority of celiacs are actually IgA deficient. My problem is that my GI is just dying to diagnose me with IBS and get me out of his hair (what little of it there is :)), so he's already biased against a celiac diagnosis (as I suspect most doctors seem to be). Also, I guess without some kind of laboratory proof, I'm hesitant to try a completely gluten-free diet without the endorsement of a medical professional. Someone has mentioned the use of enterolabs to test for celiac? Can you provide me with the website information?

It would be much appreciated!

Elcamino

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

Celiac.com Sponsor (A8-M):


par18 Apprentice
par18
Posted

Hi,

I guess my question to you is why do you need the endorsement of a medical professional to at least give the diet a try. If you do try it and it does not work then to me that would be reason to maybe test for something else. Trying the diet is "free" as opposed to the expensive testing. If however you do try the diet and it helps and then decide to get further Celiac testing then go back to gluten and try to get a positive diagnosis. If you do in fact have undiagnosed Celiac Disease or Gluten Intolerance then the ultimate treatment is still the same. The "diet" is the only treatment now or later.

Sounds like your initial experience with the medical profession has not been successful. Hope this helps.

Tom

Elcamino Newbie
Elcamino
Posted
  • Author
Hi,

I guess my question to you is why do you need the endorsement of a medical professional to at least give the diet a try. If you do try it and it does not work then to me that would be reason to maybe test for something else. Trying the diet is "free" as opposed to the expensive testing. If however you do try the diet and it helps and then decide to get further Celiac testing then go back to gluten and try to get a positive diagnosis. If you do in fact have undiagnosed Celiac Disease or Gluten Intolerance then the ultimate treatment is still the same. The "diet" is the only treatment now or later.

Sounds like your initial experience with the medical profession has not been successful. Hope this helps.

Tom

I'm hesitant to just try the diet because it seems pretty difficult to eliminate gluten altogether, and I'd be eliminating a good source of grain with no justification. I guess I don't need an endorsement from the medical profession; I'm just trying to get up enough nerve to try the diet. Thanks for your reply. I will look into some details regarding the diet.

Elcamino

nowheatnomilk Rookie
nowheatnomilk
Posted

listen to your body I'm lactose intolerant. I drink lactait and avoid all dairy products. when I had realize I was lactose intolerant and followed the diet recommendation, the symptoms did NOT go away.

I was tested for celiac. and have both. along with mention acid reflux.

  • 1 month later...
F.deSales Rookie
F.deSales
Posted
Hi all,

I've been reading your posts for quite a while now. I was given the celiac panel about 6 weeks ago. Evidently, the results are meaningless because I am IgA deficient (they did conduct a total IgA for me). GI, to exclude Celiac and positively diagnose me with IBS, took multiple duodenal biopsies last week. Only positive finding at the time of the exam was erosive gastritis; still waiting on biopsies on celiac and cause for the erosive gastritis.

I am also severely lactose intolerant and have been for most of my life. Everytime I google IgA deficiency and lactose intolerance, Celiac-related websites pop up. I've also read that a minority of celiacs are actually IgA deficient. My problem is that my GI is just dying to diagnose me with IBS and get me out of his hair (what little of it there is :)), so he's already biased against a celiac diagnosis (as I suspect most doctors seem to be). Also, I guess without some kind of laboratory proof, I'm hesitant to try a completely gluten-free diet without the endorsement of a medical professional. Someone has mentioned the use of enterolabs to test for celiac? Can you provide me with the website information?

It would be much appreciated!

Elcamino

Hi Elcamion!

I have complete IgA deficiency and allergic to lactose/casein. I am currently being tested for ceilac sprue. My doctor told me that there was a NEW blood test that was for people with IgA deficency its called: Tissue Transglutaminase. Do a google search to learn more about the test. If your doctor has not ordered if ask him too. I will be going to the lab today to have that test done.

My doctor also wants to do a EGD and a colonoscopy which I will have in two weeks. I have nerological problems also and my nerologist told him to do a biopsy. I have been gluten-free for 7 weeks and have been feeling better but now I have to go back on gluten to make sure the test is accurate.

I would love to hear if you had the Tissue Trans. test and what the results were. I hope you don't end up like me, I started with low IgA and became total. I am in the 3-5% of IgA-ers who are severely immune compromised, multiple related illnesses plus allergic to blood other than my own.

Let me know what you results were if you don't mind.

Best wishes to you.

Angie

ravenwoodglass Mentor
ravenwoodglass
Posted

I think the most important thing that I have to add is that relying on blood work for celiac confiramtion almost killed me. I was tested over and over and over, along with tests for lots of other things. An average blood draw for me at the 'best' hospital in my area (it is well know nationally) was 20 tubes and still left me in the dark and dying. It was not till I was literally at death door that a elderly and savvy allergist put me on a true elimination diet and celiac was found. It was then reluctantly confirmed by my GI when his gluten challenge caused a major GI bleed.

Do not be afraid to try the diet because you think you will be lacking something by giving up wheat, rye and barley. They have in reality very little nutritional value, none actually if you are not digesting them, and the carbs you will lose can be replaced with rice, veggies and fruits. Once you get used to it and the inane way some foods are labeled it really is not hard and is much healthier than the typical deadly American diet.

Archived

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

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


  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    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.