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Hello! Any Others Who Can't Get A Formal Diagnosis?

BlessedMommy

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BlessedMommy Rising Star
BlessedMommy
Posted

Hi, I've been registered to this forum for awhile but haven't really posted.

 

I wanted to share my story and find out if there were other people in the same boat. When I was pregnant with my first daughter, I got a really horrific skin rash. It left me in pain and itching almost continuously. Nobody could tell me where it came from. I went to the dermatologist and he prescribed me category C steroids. Those helped clear the rash to some degree, but it can back instantly. I did bloodwork and nothing came back abnormal. I really, really wish that somebody would've ran a celiac blood panel!

 

After my daughter was born, the rash cleared to some degree, but I was still miserable. My skin on my hands was badly broken out, my face was puffy and had dark circles, I had trouble losing the pregnancy weight and I struggled with postpartum depression. I tried a number of natural things, including a raw foods diet and my problems seemed to clear to some degree. When my daughter was 21 months old, I got pregnant with my son. This time I was determined to have a better pregnancy, so I decided to try an elimination diet. 

 

I felt great without the wheat, but within 3-4 days of reintroducing it, the same identical rash from my first pregnancy started coming back. It even started developing in the same spot! I quit the wheat and it immediately cleared up. I did a very low wheat diet for the rest of the pregnancy and things went relatively smoothly for the rest of the pregnancy. 

 

When my son was a few months old, I decided to try being all the way gluten-free and eventually I went to a naturopath who tested me and said that I was intolerant to all gluten and not just wheat. So I tried gluten-free for a few months (though I wasn't super careful about cross contamination) and then I realized that I could have celiac disease. I went back to my naturopath and she said that according to her test, I was celiac, but in order to get a full formal medical diagnosis, I needed to go back on wheat and get blood tests.

 

I started the gluten challenge and it was a disaster. I looked like I had gotten punched in the face. Puffiness, dark circles, fatigue, and eventually migraine headaches. On day 10 of the gluten challenge,  I had a TIA (transient ischemic attack or mini stroke) and went to the emergency room. I had numbness on my right side and speech difficulties.The hospital performed a CT scan and found no brain abnormalities. I went back to my regular doctor and asked if he wanted to run any more tests. He said, "No, just stay away from gluten." The day of my hospitalization was the last day that I have ever intentionally eaten gluten. That was February 13, 2010. From that day forward, I made the commitment that I would be gluten-free. As soon as I quit the gluten, the headaches started to go away. In a few days, I felt totally normal. To this day, 4 years later, I have never had any recurrence of those frightening symptoms, though on occasion, I've had an itchy rash or a flaming bright red face that indicated I probably got some trace level of gluten unintentionally.

 

I would love to have a "real" diagnosis, but unfortunately, with those types of symptoms on a 10 day gluten challenge, I would probably not survive a 3 month gluten challenge and I'm uninsured, so I don't have the money for a biopsy. My husband and I agreed that intentionally placing myself in harm's way to prove something that we basically already know is kind of pointless. 

 

Most of the time I'm okay with not having a formal diagnosis, but the other night it kind of grated on me. I went to a potluck and I made sure to bring a safe item that I could have. Someone placed my soup ladle on a piece of aluminum foil that was used to cover a loaf made with bread crumbs and then redipped the ladle in the soup. I refused to eat my own soup! I think that people thought that I was making a bigger deal out of things than necessary and sometimes I wonder if a diagnosis of celiac disease would make people take me more seriously. Then again, lots of people don't understand the gravity of celiac disease either, so it might not!

 

I look forward to posting around here more!

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cahill Collaborator
cahill
Posted

Welcome :)

 

Many of us have gone undiagnosed and/or were diagnosed very late in life .I understand that need for a " real" diagnoses but  for me it has not made much difference ( in the ways I thought it would)

I would have not gotten my "official " diagnoses except for  the fact my GI doc was educated outside of the US and is open minded.He sent me for a DH biopsy. 

Do you still get the rash? One of the possibilities  for a " real " diagnoses is if the rash is DH.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

I do get a minor rash when exposed to low levels of gluten. 

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Do you have to be eating gluten to get a DH biopsy?

cahill Collaborator
cahill
Posted

No you do not have to be eating gluten to get a DH biopsy. But you do have to have active lesions ..

RMJ Mentor
RMJ
Posted

I was tested for celiac because of migraines. I had positive antibody tests, but no endoscopy. I find that people are very supportive when I say that gluten gives me migraines. People understand headaches/migraines.

nvsmom Community Regular
nvsmom
Posted

Most of the time I'm okay with not having a formal diagnosis, but the other night it kind of grated on me. I went to a potluck and I made sure to bring a safe item that I could have. Someone placed my soup ladle on a piece of aluminum foil that was used to cover a loaf made with bread crumbs and then redipped the ladle in the soup. I refused to eat my own soup! I think that people thought that I was making a bigger deal out of things than necessary and sometimes I wonder if a diagnosis of celiac disease would make people take me more seriously. Then again, lots of people don't understand the gravity of celiac disease either, so it might not!

 

A celiac diagnosis won't save you that hassle. I was diagnosed and I still get some eye rolling and comments behind my back that I'm overdoing how strict I need to be. That's just ignorance talking. They don't realize that they are wrong so I'll correct them once or even twice but after that it's a losing battle and I just have to make sure that at the buffet table I serve myself first before the food gets contaminated.

 

And ditto a1956chill, if you have dh, you can get tested. Just make sure they know to biopsy beside the rash and not on the rash.

 

Best wishes.

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BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Thanks for the encouragement and comments, everyone! One thing that I do have on my side is that my doctor agrees that I'm intolerant to gluten, so at least I can tell me that my doctor recommends that I stay away from it! LOL!

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Why would they biopsy beside the rash and not on it?

kareng Grand Master
kareng
Posted

Why would they biopsy beside the rash and not on it?

The antibodies they are looking for show up in the skin next to the fresh lesion. That is the protocol.

Open Original Shared Link

How is dermatitis herpetiformis (DH) diagnosed?

DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody. DH is treated with a gluten-free diet and medication to control the rash, such as Dapsone or Sulfapyridine. Drug treatment is short term, usually until the gluten-free diet begins to relieve symptoms. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Thanks for the help!

 

Can a regular dermatologist do this test? How much does it cost without insurance typically?

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