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Member Since 08 Nov 2012
Offline Last Active Dec 07 2012 12:06 AM

Posts I've Made

In Topic: I've Been Thinking....

06 December 2012 - 11:26 PM

I had exactly the same thing ... no one diagnosed it properly. They completely disappeared once I was gluten free/wheat free. For myself - they seem directly related to wheat .. if I eat wheat they come back; as long as I avoid wheat they are no where to be found. Sounds like DH to me too. Best of luck ...

In Topic: Sometimes I Really Hate Doctors

18 November 2012 - 09:30 PM

I was diagnosed with a gluten-intolerance several years ago. The tests were inconclusive, but my doctor was pretty darn sure of it. I had previously been diagnosed with IBS-D, and I responded to a gluten-free diet so he kind of just went with it.

After I had my son last year, my doctor had said some people can tolerate gluten after pregnancy, so he said I could slowly add a little in and see how I dealt with. I was able to successfully move to a non-gluten free diet.


A couple months later, I started getting sick a lot and I'm to the point where I get infections every 3-4 weeks (mostly upper respiratory stuff), my anemia has returned, IBS-D has come back as has my rosacea (both were in remission for several years). I've also developed a problem with joint pain, headaches, fatigue. My doctor had said that it was tonsilitis, and so I had a tonsilectomy three months ago. I'm still sick every month, and I have chronic throat pain. I've been on painkillers for probably about 6 months. And I just feel so warn down.

Might be time to revisit the gluten-free diet.

Really seems like you're reacting to gluten; especially since you indicate you were doing so well when you initially removed it. I agree with you that you should probably return to gluten free.

Often times with autoimmune, medical community seems to be at the mercy of how the disease presents itself. As a medical professional myself, I'm not disparaging the profession at all. It just simply seems that every person's symptoms vary greatly, so it's difficult to coral autoimmune into a defined "box". Coupled with hormonal fluctuations (ie- having a baby) - autoimmune can be volatile.

Personally, I spent years +++++ trying to figure out what was "wrong" with me. Took my own research & elimination diet. Identified gluten as a trigger but mostly wheat allergy. I am much more reactive to wheat (especially gmo wheat) than anything else; (ie - sinus migraine, congestion, headaches, skin lesions, inflammation, bloating - you name it:) ALL gone when I don't eat wheat/gluten. Removing wheat also helped my thyroid medicine be better absorbed & used by the body. No doctor (or even a few nutritionists) ever suggested a gluten free diet for thyroid. I pursued it myself after all my "researching" :)

On a side note, my Dad has an intestinal issue that was mostly asymptomatic for 60 + years; a few years ago had to have piece of intestine removed when it was found to be lesioned & destroyed. Doctors were shocked. Doctors place him in the "crohn's" category - though he's still asymptomatic but must be on meds/steroids etc. to keep intestine from inflammation and multiple lesions. He responds to gluten/wheat free but has a hard time maintaining it:) Additionally, my sister, was just diagnosed with Behcet's disease (doctor says it's like a "sister" disease to crohn's) - she had a baby ten months ago & the symptoms started after giving birth (those hormones!). Her lesions were oral, facial & swollen tongue. She is following wheat free/gluten free now and has been successful in no further outbreaks. She is too young for constant steroids and no meds are compatible really with childbearing so she is going the diet route (doctor thinks best route given her age, symptoms & my success with it). So the genetic component is important for you to note (obviously we both inherited genes from my Dad & the allergy/intolerance manifested differently in all three of us, but is definitely wheat related).

Not all issues are diagnosable by specific tests; it is important to note your responses to foods and know yourself. If you are able to follow the gluten free and feel "better", you should give it a try again. Best of luck to you ...

In Topic: Rash That Looks Like Bites? Due To Gluten? (Photos)

08 November 2012 - 11:53 PM


After a year of constant sickness and stumping 4 gastroenterolists, I was finally diagnosed with a rare parasite. Needless to say, my GI is all messed up and I am slowly healing. I also think I may be gluten intolerant (was tested for celiac and gluten allergy, but came back negative).

One symptom I noticed when I wasn't yet strict on my gluten-free diet were these random welts that I would discover every other week. It seemed like only one would form and then dissolve, then maybe I'd get another one two weeks later. They were incredibly itchy, and honestly I had always thought it was just a spider bite. I went back on a gluten-free diet and they seemed to go away. I thought maybe it was due to gluten, but i'd eat it occasionally (a slice of pizza maybe once or twice a week) and it wouldn't always happen.

I've been totally gluten-free for 2-3 months now. Now on Tuesday, I broke out on the left side of my neck, left forearm and left finger in a whole bunch together -- probably 12 total (most I've had at once was 2). I went to the doctor and he diagnosed it as shingles (because they are all just on one side of my body). He said he was "95% sure", despite the fact that I have no pain at all, no sick feelings, and absolutely no blistering which are all symptoms of shingles. The only thing I can think of was I had toasted some bread in a toaster oven the day before the bumps broke out. There is the possibility of cross contamination, but just a few days earlier than that I had done the exact same thing and had no problems at all.

I was wondering if anyone has experienced these symptoms. I added photos, I'm sorry that they are so gross. I was hoping someone would recognize the same type of rash. I honestly don't think it's shingles. Could this be gluten? If so, why does it only happen sometimes, and why would it happen so badly this time if it was just a little cross contamination?
Thank You!


Hi, it may be you are reacting to the wheat - more so as an allergy, rather than just to the gluten. I found after doing an elimination diet to determine exactly what I was reacting to, that it was a reaction to wheat. I did not have reactions or skin lesions/red spots with any other grain - only with wheat. I have removed wheat completely from my diet. I follow very "clean eating" now. I thought I was eating "healthy" all along - I was always very careful - but I was unaware of my wheat/gluten allergies/intolerance. Occasionally I have had a slice of pizza etc. - but pay the price. I found that since removing wheat from my diet, all my symptoms have been erased; but I am also that much more sensitive to the wheat when I do consume it (as my tolerance is no longer built up to it). And also notable, I react differently to different wheat. My research has shown those with wheat allergies are more reactive to GMO (genetically modified) wheat vs. organic wheat. And i believe I read that re: GMO wheat - there are something like 25,000 different forms of it. I react to both, but much more severely when the wheat is not organic. And the reaction comes from consuming merely a piece of cake, a cookie, a piece of pizza. So you may need to determine if it is not just the gluten you're intolerant to, but possibly maintain an additional wheat allergy. (when I did the testing I was extremely thorough - I did not react to barley or rye at all to the degree that i did with wheat ... wheat even induces "allergy" symptoms such as sinus headache, stuffy nose, watery eyes, itchy lesions - since eliminating wheat I no longer require Claritin or antihistamines; all these years I thought I suffered from seasonal allergies to the outdoors!) Best of luck to you ; try to identify the culprit & you'll banish the skin lesions ... mine are completely gone.

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