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

Possible Celiac Candidate?

Greekbabyyy

Recommended Posts

Greekbabyyy Newbie
Greekbabyyy
Posted

Hello everyone!

I've suffered with an eating disorder in the past. I've been recovered and have been following a nutritionist meal plan down pat which I'm proud of. However, I have this HUGE problem with digestive issues that just won't go away!

Almost 2 years ago I was diagnosed with being lactose intolerant and having IBS-C. I've been managing alright with that.

However with talking to my therapist about my stomach constantly bothering me, she says I should check into being tested for Celiac disease.

Every single day, I cannot go without a meal that doesn't bother me. The only meal that won't bother me is breakfast, when I have gluten free/dairy free cereal with Almond Breeze milk and a fruit such as a peach, apple, etc.

For instance for a snack, I had a granola bar with a peach. After I ate it I was in SO MUCH PAIN in my stomach, especially underneath my ribcage.

Almost day, I usually have symptoms of:

- Abdominal pain/upset stomach (whether it's burning, aching, bloating, etc)

- Constipation... and I drink a lot of water! Sometimes here and there I will find mucus in my stool.

- I get tingling in my feet

- Horrible gas

For my moods, my anxiety is on the elevated side.

I just need some guidance... if I don't have Celiac disease and suffer from such discomfort every day, I'm not sure what I have!

Thanks for the help!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hi, and welcome to the forum.

I agree with your therapist that you should be tested for celiac disease; your symptoms are very suggestive of at least gluten intolerance, or maybe full blown celiac disease. The symptoms of each condition are the same - the difference is that with celiac disease there are measureable antibodies to gluten in the blood abd observable damage to the small intestine on biopsy.

I would do the testing, but even if it turns out to be negative I would try eliminating gluten from your diet because I believe it would relieve your symptoms, all of which have been reported by people with celiac/gluten intolerance.

Skylark Collaborator
Skylark
Posted

I would do the testing, but even if it turns out to be negative I would try eliminating gluten from your diet because I believe it would relieve your symptoms, all of which have been reported by people with celiac/gluten intolerance.

Mushroom is right on target. You have SO many symptoms that could be caused by gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi, and welcome to the forum.

I agree with your therapist that you should be tested for celiac disease; your symptoms are very suggestive of at least gluten intolerance, or maybe full blown celiac disease. The symptoms of each condition are the same - the difference is that with celiac disease there are measureable antibodies to gluten in the blood abd observable damage to the small intestine on biopsy.

I would do the testing, but even if it turns out to be negative I would try eliminating gluten from your diet because I believe it would relieve your symptoms, all of which have been reported by people with celiac/gluten intolerance.

I agree also. After you are done with testing get on the diet strictly. Your body may give you the answer before you even get the test results back.

Greekbabyyy Newbie
Greekbabyyy
Posted
  • Author

Thank you all for your supportive responses. I really appreciate it!

However, I'm concerned about a couple things:

- If I get tested and results come back negative, what do I do from there? Should I investigate other conditions that I may have instead of celiac disease/gluten sensitivity?

- I'm not the type of person who suffered from malnutrition from gluten (malnutrition was years ago from the eating disorder). Right now, my weight is stable and is at a healthy place and I haven't lost. Is this a problem? A lot of people with celiac disease suffer with weight loss, etc. For me, when I eat something, I can gain weight sort of easily.

- Lastly if I do have celiac disease/gluten sensitivity, will I gain weight quickly from a gluten free diet? I'm comfortable where I am because I'm in a healthy place, but I've read stories where people gain 20-40+ pounds because of going gluten free. I don't want to become like that!

- Oh yes, and are skin rashes of some sort part of celiac/gluten sensitivity? On my thighs, I get these red bumps that flare up (it looks like keratosis pilaris). I just noticed them on my thighs and they are pretty bad right now!

Skylark Collaborator
Skylark
Posted

Thank you all for your supportive responses. I really appreciate it!

However, I'm concerned about a couple things:

- If I get tested and results come back negative, what do I do from there? Should I investigate other conditions that I may have instead of celiac disease/gluten sensitivity?

- I'm not the type of person who suffered from malnutrition from gluten (malnutrition was years ago from the eating disorder). Right now, my weight is stable and is at a healthy place and I haven't lost. Is this a problem? A lot of people with celiac disease suffer with weight loss, etc. For me, when I eat something, I can gain weight sort of easily.

- Lastly if I do have celiac disease/gluten sensitivity, will I gain weight quickly from a gluten free diet? I'm comfortable where I am because I'm in a healthy place, but I've read stories where people gain 20-40+ pounds because of going gluten free. I don't want to become like that!

- Oh yes, and are skin rashes of some sort part of celiac/gluten sensitivity? On my thighs, I get these red bumps that flare up (it looks like keratosis pilaris). I just noticed them on my thighs and they are pretty bad right now!

It's possible to have negative blood tests and still be gluten intolerant. The only way to know for sure once you're done with the testing is to try the diet. Other conditions that can mimic celiac are small intestinal bacterial overgrowth and microscopic colitis. You can let your doctor continue tests while you try a gluten-free diet. The celiac tests require that you keep eating wheat, but nothing else does.

Celiac malnutrition is not necessarily thinness. I have always been on the heavy side of normal, but I had borderline anemia, some hair loss, ridges in my fingernails, low-normal serum calcium, and thin tooth enamel. Some people with celiac are thin, but more are normal weight. Some are overweight, as their bodies seem to want more food to try to get missing vitamins and minerals.

I completely understand your concern about weight with your history of an eating disorder. There is nothing special about a gluten-free diet to cause weight gain if your weight is normal. Underweight celiacs who can't even absorb calories will sometimes gain (and are generally glad for it), but a lot of people find that the elimination of breads, baked goods, and pasta helps them lose. You already have a nutritionist-planned diet with the right amount of calories for your frame and exercise level. Can you substitute foods with similar nutrition and calories with gluten-free foods for a little while?

As far as rashes, there is a rash called dermatitis herpetiformis that is caused by celiac disease. You could look pictures up and see if it matches. I don't have it, but it's supposedly itchy and blistered.

Greekbabyyy Newbie
Greekbabyyy
Posted
  • Author

Hi Skylark! Thanks for replying!

For the skin condition aspect of Celiac disease, it doesn't look like the one you are talking about.

The other day I can't tell you how much pain I was in. For breakfast I had a bowl of Cheerios with soy milk and a small peach. Right after breakfast my stomach killed for the whole day non stop. It was so horrible. The next morning, I had the Envirokids Panda Puffs cereal (gluten and dairy free) with soy milk and a small peach. I was perfectly fine from that.

Basically, it is probably worth it to get tested?

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

If eating gluten causes you that much pain, yes it is worth getting tested. Unfortunately, you will have to keep eating gluten to get a valid celiac tests. The results will let you know whether you have celiac disease, or are just one of the many people who feels crummy when they eat gluten.

If you get negative results, don't worry about it. You can be gluten sensitive without a bunch of test results and it's obviously silly to eat something that causes you that much pain.

If you're like me and don't need/want a label, just go off gluten and be grateful you figured it out. I never did get blood tests done.

Greekbabyyy Newbie
Greekbabyyy
Posted
  • Author

If eating gluten causes you that much pain, yes it is worth getting tested. Unfortunately, you will have to keep eating gluten to get a valid celiac tests. The results will let you know whether you have celiac disease, or are just one of the many people who feels crummy when they eat gluten.

If you get negative results, don't worry about it. You can be gluten sensitive without a bunch of test results and it's obviously silly to eat something that causes you that much pain.

If you're like me and don't need/want a label, just go off gluten and be grateful you figured it out. I never did get blood tests done.

Thanks again, Skylark! You've been very helpful. :)

I will still go try to get tested anyway and I'll see what happens!

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • 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
      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.