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Ibs, Dermatitis Herpetiformis, Misdiagnosed?!

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Hey y'all! This is my first post on any forum, but I have came to my last straw, so I decided I may be able to find some answers from some of you who are diagnosed with Celiac or who were once misdiagnosed. Sorry in advance, this might be lengthy.


I was diagnosed with IBS in middle school, I am now 21 years old. I do not remember IBS ever affecting me to the extent it is now. I was a soccer player for 17 years, very active, raised on whole grains and healthy food, etc. In college I began to run marathons - almost qualifying for Boston after my first marathon. However, 2013, that is when my "IBS" started to go downhill pretty bad.


Thanksgiving 2013: I got so incredibly sick immediately after eating my meal. My stomach was so distended I looked nearly 6 months pregnant if not more... I could not lay down on my stomach, I could not touch it, I was bawling my eyes out and my mom was contemplating if I should goto the ER or not. I did not goto the ER because everyone knows that's expensive as heck and half the time you get stuck with a doctor who is arrogant, or maybe that's just my luck. However, about a week and 1/2 later, I was driving to the gym and had the most intense pains in my stomach just like Thanksgiving. I could not continue driving and had to put my emergency lights on to speed home. I was then taken to the ER and put on IV's, etc. The doctor was VERY arrogant and I remember my mom was going off on her because she was saying I just had a "belly ache." Bull. We did a CT scan and come to find out my small intestines were inflamed along with my pancreas. My grandmother then was able to get me in with her GI doctor stat instead of me having to wait an entire month, thank God.


A few days after this ER visit... I got a rash all over the my thighs that looked like bug bites. Let me add that I NEVER get rashes and it was not chicken pox or shingles. I took pictures of it and made sure to show the gastroenterologist at my appt. When I explained my symptoms and the ER visit, etc. I also showed him the pictures of the rash. I asked him if it could be Dermatitis Herpetiformis. He literally didn't even EXAMINE the picture, maybe looked at it for 2 seconds and disagreed with my opinion. We did a blood test to see if I had Celiac and I tested negative. So, we thought about Crohn's being a possibility.



- Consistent and explosive diarrhea every morning, sometimes having to RUN to the bathroom. Will go 3-6 times in an hour and a half.

- Or I have constipation. Never a normal bowel movement, basically.

- Some stool will be floating in the toilet, some food not digested will show also.

- FATIGUE OUT OF THIS WORLD causing me to put running on hold and is affecting my every day life.

- Joint pain (more recent) mostly in my knees and ankles.

- Irritability and depression (when feeling bad).

- Stomach cramping, trapped gas or excessive gas which is very stinky, major bloating every day.

- Headaches

- Dry skin, brittle nails, brittle hair

- Circles under my eyes


July 2014: After months of stomach issues worsening, I finally got a colonoscopy and endoscopy by that ridiculous GI doctor. Did more blood work, celiac was negative, but my lipase levels (pancreas) were still slightly elevated - meaning I wasn't breaking down carbs and fat correctly.. Despite my cries of pain with my stomach and the inflammation of my small intestines, SOMEHOW both scopes showed A PERFECTLY FINE STOMACH. There is NO way.... I don't think he took more than one biopsy, so... We left very disappointed and had no answers. He told me to "eat more fiber." I eat a very healthy diet full of fiber... He said my intestines then were not inflamed. But then, I was not eating a diet high in gluten.





February 2015: the same dang rash popped up on my legs but even WORSE and it lasted for about 1-2 hours and was itching like CRAZY. Would come back every night for about 3-4 nights. I had many more pictures of this rash that showed the severity of it, but sadly only could find these two pictures. --- YES I KNOW THIS PICTURE IS QUITE REVEALING BUT IT'S THE BEST SHOT I HAVE OF IT WHEN IT HAPPENED. (SORRY). The rash was also on my forearms, but mostly covering my thighs and bottom.


Currently: I have woken up twice in the middle of the night (back to back nights) with the most NAUSEOUS feeling and in such pain I have to curl up in a ball. My pain would be lower belly and extremely painful. My fatigue is CONTINUOUSLY getting worse and worse to the point where I'm literally about to give up... My gas is EXCESSIVE and stinks terribly. I have some poop that floats in the toilet. Still have diarrhea EVERY time I goto the bathroom. If I don't goto the bathroom in the morning, I'm constipated all day long and will barely pass gas if severely constipated. My head is throbbing, my joints are hurting more and more each day and I am constantly bloated... I am so miserable and have had no answers, I am starting to lose hope that I will ever feel basically alive again..


I really need some input on this whole situation... I haven't been tested for Celiac since that winter/last summer, but I have heard of many people getting negative blood tests and a positive stool sample or positive biopsies... I have also heard of people being misdiagnosed for years who have had IBS but in reality it was Celiac or it eventually turned into Celiac.


Thanks in advance to anyone who is able to help me out for the time being... Sorry again for the picture, but I'm desperate.




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Celiac.com Sponsor (A8):

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Don't worry about the photo hon. No problem - at least not to me - heck, Ive revealed more than that in photos of the rash. Do you have copies or can you get copies of the "celiac" blood tests that were done? The same with the endoscopy & lab report of the biopsy? Those would help a lot. It's quite possible you were never given the FULL celiac blood panel which should also include checking your total IgA to see if you're IgA deficient b/c if you are then the results of the rest of the bloods take on a whole new meaning.

Also if you were taking any oral steroids or had been given any steroid shots within about 2 months prior then the tests can be false negative as can the endoscopic biopsy. The doc can not SEE celiac in the endoscopy although they can sometimes see inflammation. The small intestine, when filleted & spread out will cover a tennis court so docs can't really see all of it in an endoscopy. Plus only the biopsy can truly determine celiac. PLUS for any & all of the tests you have to have been eating a regular gluten diet as a matter of course.


Then there is the rash. You could be in early stages of dh or it could be some other type of rash. How fast does it go away after presentation? Generally always bilateral? Itches like insane drive you out of your mind nuts crazy want to peel your skin off? 


Your symptoms are enough to warrant a thorough testing for celiac disease. I suggest you find a new GI doc, preferably one experienced with celiac disease. 


Get your prior test & post them here please including the reference ranges. There are those here who are very well versed in reading them. Like I said, it's possible/probable you weren't given the full panel. 


I know that bloat you speak of. It scares the heck out of you! 


Oh, forget those stool sample tests -- that's bunk -- they can not tell you if you do or don't have celiac -- all they do is waste your money. 

Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Welcome to the board. 

Your description of your symptoms do sound like you could be one of us. IBS doesn't wake people up. This info came direct from my GI AFTER I suffered for years and had finally been diagnosed. I had told him that was happening but he just didn't listen. He apologized profusely and I found another doctor. 

Do keep eating gluten and request another full celiac panel.

As to the rash your description of the way it comes and goes sounds like hives. I used to get them extensively before diagnosis. DH doesn't go away in a couple hours and will generally have blisters and leave purpulish scars that are slow to fade. I also had problems with hives. What seemed to help was a cool compress. I would get them from pressure and could bring them up by just softly scratching or even the pressure from clothing bands. Some folks get some relief from antihistimes. If you don't have reason to avoid, like taking other meds for example, maybe try taking a benedryl before bed. Can't say for sure it will help but may be worth a try.

Hope you get some relief soon. When you are done with all testing do give the diet a good strict try. False negatives do happen. 

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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