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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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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
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