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Possible Celiac Candidate?

Greekbabyyy

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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!

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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?

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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!

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      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
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    • trents
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