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Severe Symptoms, but no diagnosis, please help.

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Hello! I was hoping that you all could help me with a diagnosis. I have been dealing with severe food intolerances for years now, and the first thing I discovered that had to go, was GLUTEN. During my journey of things with cross contamination or accidental ingestion, I experience some symptoms within minutes. The first thing that happens is mouth sore in the same spot that will last for weeks, along with terrible stomach pain/distention, severe constipation, and headaches/fatigue. I am a personal trainer and health nut (currently going to school for nutrition science), so I eat extremely healthy and do ALL of my cooking (we never eat out because I get sick). I  went to a Gastroenterologist who tested for celiac and it was negative (keep in mind, I haven't eaten gluten for three years, except for the accidents), he also did a colonoscopy/endoscopy and determined that I was not Celiac. However, I tested positive for ANA and have extreme inflammation and symptoms of several Auto Immune Conditions. He referred me to the Mayo Clinic but it was a $5k deposit just to go... Needless to say, I have been searching for an answer ever since. I was just diagnosed with Hypothyroidism and put on a very low dose of Armour Thyroid and I follow a paleo approach to eating, actually AIP for a while. I thought it may be Hashimotos due to a rapid elevating TSH, but I was negative for the antibodies (however, I had been on medication for over a month at the time of testing). I have seen improvements, however, I have flare ups of inflammation, fatigue, digestive issues, etc.. And if I get glutened, it is absolutely terrible and takes me weeks to months to fully recover. 
I just wanted to see if someone could help me. I have no desire to do the "gluten challenge" for a test, but I am desperate to have a diagnosis so that I atleast know what is wrong with my body.

Thank you!!

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I'm sorry but we can't give you a diagnosis as we are not doctors. It's too bad that you were tested so long after having been gluten free. Surely you got false negatives. You said it yourself, you obviously react strongly to gluten. You may very well be celiac but as you already know, there's no way for you to get a dx without doing a gluten challenge. Maybe one day we will have accurate testing methods that do not require us to gluten ourselves but at this point in time there is no such thing.

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Hi,

I might be able to help. 

After removing gluten from diet I still was very ill and had continuous flare ups. It wasnt until I actually treated the celiac disease I got a whole lot better. You need to heal the damage. 

I got better after doing a food intolerance diet and a Candida diet (which I'm still doing, it can take years to heal up). 

I ignore gluten, became intolerent to gluten, potatoes, cows milk and ignore sugar, all grains, dairy and eat organic meat (ignore antibiotics they make it worse like they did to me, and doctors kept on giving me). I take probiotics, digestive enzymes, licorice tea, etc and getting better. 90% better. Do some research on how to heal celiac disease (eg candida diet, leaky gut) hope you feel better. 

 

Katie 

(My symptoms were : severe acid reflux, persistent vomiting, fatigue, anxiety, depression, severe migraines, abdominal pain, after eating gluten its like I have a stroke I loose my speech, loose all feeling, fatigue and dizziness I could go on and on) I'm simply not me.

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Wow, thank you for replying! :-)

I have the exact same symptoms except of the vomiting. Yes, the brain fog is definitely a real thing! Sometimes I feel crazy, so it is nice to know that I am not alone.
I am in the same boat as far as food intolerances go. I have a very restrictive diet and have to stay away from all dairy, soy, grains, gluten, and nightshades. However, even without eating these foods I sometimes experience "flare ups". I follow a Paleo/Leaky Gut Healing type of diet. I decided to do my own research because I didn't receive much help from the doctors..

I do take a really good probiotic and digestive enzymes which help a lot, but I will look into the licorice tea.
 

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Have you been tested for lupus by chance?   You're right, that positive ANA is an indicator for possible autoimmune/inflammatory diseases.  It wouldn't hurt to ask for an SLE blood test.  You don't have to be on gluten for it.   Regardless, attacking the problem holistically with diet and herbs is a good approach, and certainly can't hurt.  Herbs that support liver and kidney function (dandelion and burdock) wouldn't hurt either.  A healthy liver and kidneys are vital to calming down an overactive immune system.

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