The Story of My Diagnosis

I know your feeling and can relate 100%. It took me almost 6 years to determine my issues and another year to realize, yes, it really is the gluten. Now I'm struggling to recover.

Keep the faith.

I have been very healthy all of my life!

Last year I developed a terrible rash on my back, burning, itchy welts. I don't have health insurance, so my GP was the only person I could see, (specialists are expensive!) she was puzzled.

My stomach was bad it seemed like perpetual IBS which is what she said I had.

I have family in India and hadn't been there for 9 years so I went in January, saw a gastroenterologist, my blood tests were alarming, low ferritin levels, an extremely low RBC of course. He diagnosed me as severely anemic.

His suggestion was that I eliminate wheat first and then dairy on a trial basis, take iron in therapeutic doses and step up iron rich and bulky foods...salads, fruit etc.

My diet was excellent, food in India is non GM for the most part, South India eats more rice than wheat, and lentils and beans are essentials. It was not difficult to do.

I saw a lot of improvement, my rash was completely gone, (actually within 3 weeks of getting there last January) my digestion was improving...then I came back to the US!

I "slipped" into old patterns...Kellogg's Mini Wheats were always a favorite so I had a bowl every morning for about 3 days, all hell broke loose...rash, stomach ache, lethargy, depression, anxiety attacks (hadn't taken anti anxiety medication for 6 months).

A friend suggested going off all gluten so I did.

It has been 10 days, my one lapse was home made banana bread, to which I reacted within 30 minutes.

What is interesting is that the few wheat based foods I had in India did NOT have the intense reaction that I am getting here.

I read that GM wheat has three times the gluten that "natural" wheat has....

I am voting for labeling in Washington State!!

Thanks for the article, I know now I am nor crazy OR a hypochondriac.... now to get my family on my side without thinking I am a hypochondriac or crazy.

You are most welcome for the article, and thank you for yours. I have wondered for quite some time now if someone who had a sensitivity to wheat and ate wheat that wasn't over processed and would it bother them. Your results in that matter struck a chord in me. I recently submitted a letter to the Senate about GM and the labeling of it. I am still waiting on a response back! Yes, get your family on board!! You are not alone and are what I consider normal in my realm anyway.

OMG..I can't tell you how helpful this information is. I'm a 45 year old woman who was diagnosed over 7 years ago with essential thrombosythemia. This is when your body over produces platelets and you can either bleed to death or have a major blood clot. Since being diagnosed and having episodes of clotting in my stomach, esophageal varcies, bleeding etc. it has finally been under control with various medications. However, early on in my diagnoses, I noticed numbing in my hands and painful pricks in my feet. I was always told that perhaps my platelet count was high and that's why my hands and feet were in excruciating pain. It made sense, since I didn't know any better. However, recently, I've noticed multiple skin bumps mainly in torso area, butt, back and legs. In addition, the food pain, referred to as neuropathy has been worse. So much so that it wakes me out of my sleep and takes my breath away when it's happening, very debilitating. I've been begging and pleading for my doctor to help me find out what's going on, as something just doesn't seem right. Well, the more I read and the more blood that gets drawn, I find myself reading more about celiac disease. I've come to the conclusion that this puzzle just seems to fit so perfectly. I'm still awaiting my appointment withe the Neurologist and Endoronologists. However, I really think that celiac disease is it. I don't want to stop gluten just yet, as I don't want the doctor to say "oh, you don't have that" but I'm really thinking once I find out I'd like to go on a completely gluten free diet. In the meantime, I will continue to read as much as I can and pray that this will all get better, as my current livelihood is at stake here. Thanks so much for this information and I certainly will be back once I find out exactly what my diagnoses is.

My closest girl friend has celiac and it is intense. She was not diagnosed for years, and was told so many things she had until finally celiac came to light. At first, like so many people with it, when diagnosed, she hoped that she will get better. But not, if anything, her reaction to any gluten after being gluten free for awhile, is even quicker and stronger. She is the 3rd person I have seen go through this. I see that none of them will get better as far as being able to ingest any gluten, and I think it should be called a handicap! Both she and another friend developed sojourns, as well as attacked their thyroids. I am writing because my best friend is still hesitant to ask for help and I think still believes that it could be she has it worse than she should. I hope she will get on here and talk to people. I know she is terrified to eat out as she has been made sick eating supposedly gluten-free foods.... the tiniest bit can cause her to be ill. Even eating something that was processed near gluten.

She wants to be able to travel, she is getting ready to go, and wants to know how other people travel, especially abroad, and stay gluten free? Anybody out there have idea? I have heard that Europe is much better and has been for longer, being truly gluten free? Thank you for any help!

I just read that celiac is found a lot in European white people...

I also heard and have experienced that Native Americans are very prone to this disease. Both my friend who are 1/3 Native American have the disease as badly as you can get it. Both have been very ill until they finally were diagnosed. One has a sister that had horrible reaction for years, all the symptoms, and finally passed away. She was an older sibling and was never properly diagnosed and her sister only after she was diagnosed realized that was what her sister had. A theory I read about Native Americans is they have never been much wheat eaters... their diets are corn. Have you heard the Native American issue?

Hi - I am so relieved to find this site! I was just at a new "functional medicine" doctor yesterday and she believes that this is a very high probability for me! I have been sick for approximately 6 years and have been in and out of doctors' offices desperately trying to find answers. Prior to this I was a highly active, sports playing, soccer mom that was involved in everything. At 43 I am not willing to accept that this is going to be how I feel for the rest of my life so here I am pouring over any morsel of information that I can find. Thank you so much for posting your story! It really helps to hear other peoples stories. Currently I eat just about everything out of a prepackaged box! I guess that came from constantly being on the go plus I am a sugarholic. This is going to take some Major food intake changes but if it makes me feel better I'm willing to try anything!!!!