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Is This A Little Unusual?


Bravie

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Bravie Apprentice

hi. I just want to say thanks to everyone who helped me in the past. I need your help once more! :blink:

Okay, so when I was first diagnosed, I was instructed to avoid gluten. At first, I felt fine off of gluten, then I slowly began to develop even more intolerances as the months passed. Since my diagnosis a year ago, I have been found to be intolerant to almost EVERYTHING. I can no longer eat dairy, soy, corn chips, pinto beans, raisins, apricots, prunes, potatoes and tomatoes (still debating on whether or not nuts and bananas bother me too). It's like, every time I eat dairy, soy, pintos and apricots, a I get almost the same exact symptoms as if I ate some gluten, minus the joint pain and diarrhea. I get a horrible rash that lasts for days at a time every time I eat these foods...

Now here's what I CAN eat: Eggs, some corn, kidney beans and lentils, all meats, rice, some peppers, fish, most fruits, most veggies, (nuts?) and candy...Is it normal to have this many intolerances to food when you have Celiac disease? I'm 21 years old and im about to lose my head because I don't know what to eat anymore. :blink:


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Rachel--24 Collaborator

Have your gut tested for dysbiosis. Overgrowths of yeast and bacteria (also parasites) can cause these ongoing problems. There are some good tests available....however, mainstream Dr.'s dont usually do this type of testing.

A couple good labs are Genova Diagnostics (Comprehensive Digestive Stool Analysis) and Great Plains (Organic Acid Test).

Genova as well as other labs offer parasite testing....however, parasites are difficult to detect.

These infections are some of the more common culprits as far as ongoing problems with food intolerances and digestive symptoms.

Sweetfudge Community Regular

i started having problems with legumes and dairy once i got comfortable with gluten-free diet. i think once your body heals up, it becomes more sensitive to the things that bother it, and reacts more strongly...just my thought though :)

purple Community Regular

Given your list of edibles, make a layered bean dip. Mashed beans or refried beans and mix in some leftover rice, layer on some peppers, veggies, and whatever else you can have. Serve with corn tortilla chips if you can have them or Riceworks chips or scoop it up with celery stix. Best part- no cooking :) I feel bad for you, my daughter is almost 20 and its hard at that age same as for school kids. My other daughter put fresh pineapple on her bean taco...hm :blink:

  • 3 weeks later...
darlindeb25 Collaborator

Do you know which genes you have? I have been reading a lot about genes since I found out I have double DQ1 genes. It seems that DQ1 people have many other intolerance's, not just gluten. You have to understand, sometimes the damage to the small intestine is so severe, it allows other foods to leak into the gut, and this is how we develop intolerance's. Sometimes though, the other intolerance's were already there, and until we are gluten free, we just didn't know about them.

I am intolerant of all grains (gluten, soy, corn, rice, oats), nightshades, cruciferous veggies, red meat, shellfish, and I gave up anything with high fructose corn syrup, and caffeine. The only processed food I use now is peanut butter and butter, if you can call them processed. I never had to give up dairy, thankfully.

DQ1 genes also are the neurological problem genes. Having double DQ1 genes is just double trouble. Your list of foods is much larger than mine. I can't eat bananasanymore, and I love them. I get a rash from many foods too, diarrhea from nightshades, constipation from the others.

Just know, there are many of us out here like you--we are all in this together!!! ;)

  • 1 month later...
mftnchn Explorer

I found I also became more noticeably sensitive after going gluten-free. My own thought about it is that my immune system was very suppressed. After going gluten-free it started waking up..and showing more sensitivity.

I have other things going on though...lyme disease, metal toxicity, parasites, etc. Now I know that I haven't healed well enough on gluten-free and still cannot break down carbs. All this makes leaky gut worse and sensitivies worse.

So the answer might be pretty complex, but it is worth seeking out the reasons.

debmidge Rising Star

Not unusual to have other sensitivities either pre-diagnosis or post-diagnosis.

So far for my husband the other sensitivities aren't going away and it's been almost

5 years now.


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    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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