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Ennis_TX

Anyone Else Have Similar Issues With Wheat In General?

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I have had a few test done earlier in the year for gluten sensitivity and came back negative, also has a bunch of allergy test done. I have found my symptoms come from even non-gluten wheat exposure, such as vinegar, gluten-free certified wheat grass, some liquors. The doctor says it seems to be that my body is treating wheat itself as a toxin, I can not recall his exact phrasing but that it was causing my body to attack my nervous system, and gut.

 

Other issues that came back with the test are allergies to corn, beets, bell peppers, (results are blood blisters in mouth and digestive tract and fever), And digestive issues with peanuts and soy causing bloating and inflammation. And as I always have dairy drives my acid reflux up the wall.

 

I have been on a gluten-free diet, sold most everything I owned to get my own place that from the ground up of construction never had any wheat in it. And have been mostly fine aside from going out and sometimes getting cross contamination off something at a friends house (touching something then eating food I brought with me without washing hands). I am sensitive to the point of a small crumb or residue giving me minor irritability. Larger amounts cause my neck where my lymph nodes are to tighten up, extreme irritability, numbness in hands, feet, bit in the arms and legs, mind fog, confusion, and later extreme pain in my gut that leaves me just wanting to lie in bed.

 

Anyone else heard of this wondering if I really am just a oddball case.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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First off there is NO test for gluten sensitivity. There are tests for celiac disease. Do you know what tests you had? Do you have a copy of the lab reports? Can you post them here? Most doctors don't order the full celiac panel because they really don't understand how to test for celiac disease. Were you eating a full gluten diet when you were tested or were you eating gluten light or gluten free? One must be eating a full gluten diet or the tests will be false negative.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Not sure what kind of test, they drew blood for it, I was on a gluten-free/wheat free diet for months when they did it. He did want to scope me but after setting up for the procedure and insurance only willing to cover 80% of it leaving me with a 1600+ usd bill I had to cancel it. I only have the lab results copies for the Allergen testing with the blood and skin results. I was not given the other reports. I also am currently in a limbo with insurance companies, I do not even understand what happened with them. Sorry for any confusion here I am not quite right in the head, I get things but I do not understand the deeper meaning of phrasing of words, along with more complex thought processes, been this way for a  few years. Feel free to treat me as a special kid, sorta what I feel like now days anyway.  I also refuse to go back on a wheat diet, it is beyond scary when your body does not do what you want it to. And your mind makes no sense at all, nothing makes sense.........I can not explain it really, just when your own mind stops working like it should and seems to lose something when it is over. That concept is the scariest thing in the world to me, rather walk into a war zone unarmed then go through that again.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Those allergy skin tests are pretty much regarded as bunk by most. As I understand it, they return as many false positives as they do true positives. This results in the person eliminating a lot of foods that they really don't need to.That's why the elimination diet is truly the best way to go to discover what you react to. It's a pita but it works.

I think most of us here know exactly what you mean when you say ,"your mind stops working like it should", we call it brain fog & there is gluten ataxia - I lost words I had used all my life like fork, table, plate, door, car ~~~ ridiculously easy, simple words so you can imagine what happened to the more complicated words. 

 

Your tests, even if they were the full celiac panel are a complete wash because you had been gluten free for months. If I were you I would treat myself like a celiac & be very strict about the diet. Celiacs can take years to recover depending on how advanced the damage was. It is quite common for celiacs to react to other foods especially when their gut has not healed yet. Vinegar is acid & it's therefore logical that it can throw you for a loop. Peanuts are hard to digest especially in a damaged gut. Most celiacs can not tolerate soy -- at least for a good while -- some goes years before they can have soy. Dairy... when the villi are damaged you can not digest lactose so dairy is a big problem. Most of us get dairy back eventually. Everyone heals at a different pace & that's dependent also on how badly damaged we were. We didn't get sick overnight & we won't heal overnight. The first year can be very wonky too with symptoms going away & you feeling great & then out of nowhere you fell like crap again -- it's sort of like a roller coaster ride but eventually it will all straighten out. The liquor is the same as the other items -- your gut isn't ready for it.

 

As far as allergies to corn, beets, bell peppers, (results are blood blisters in mouth and digestive tract and fever, I am not versed in that but there are those here who are so hang tight & I bet someone will come on who has insight for you. I have heard of people getting blisters in their mouth from peppers before so it's not like it never happens.

 

You're not really an oddball case. Does that make you feel better? I hope it does. It can scare the living daylights out of you to have your body rebel on you so strongly. Been there, done that. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Those allergy skin tests are pretty much regarded as bunk by most. 

 

Without knowing what kind of Dr. and what kind of testing, I think that blanket statement is not exactly accurate.  

 

Ennis, if it was a holistic/chiropractor who did this testing, they the results are of little use.  If it was a Dr. it *may* be accurate.  

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