New To Forum - Please Help

[Rdv22222]

Hello! I am new here. Thanks for any responses. I am a 51 year old female. I have been very stressed out this year, and I think this stress made my recent symptoms get worse. I had some blood tests taken yesterday after seeing my doctor for the third time this year.......after going to him with rash and stomach problems. I read about celiac online and have a friend who just got diagnosed. At this point, I feel pretty sure I am glucose intolerant. I found out that I am insulin resistant and have thyroid problems this year. I have major depression and I'm 50 lbs. overweight. I did lose 50 lbs. already in the last 2 years. I am worried about cancer because my brother died of pancreatic cancer when he was 42. My nephew has crohns. My sister has lupus.

I have so many questions, and I'm scared. My main fear is that I have damaged my organs or have cancer. One question, "Why wasn't I diagnosed along time ago?" Sometimes I think that if I didn't have this rash, I wouldn't have asked my doctor to test me (I did "symptom - checker" on Mayo Clinic website and it listed celiac disease as one issue when I checked "abdominal pains" and "rash".

Thanks, and I hope to be chatting with you soon.

I want to be a support to others, too.

[mushroom]

Hi, and welcome to the forum. Hopefully we can be of some help to you. I am so sorry that you are feeling stressed out and so worried; you will feel better when you get some results back.

I assume you have done a dermatitis herpetiformis google? They have some good information and pictures of DH type rashes to which you can compare yours. Can you tell us a little more about it? Does it form blisters? Does it itch like crazy and hurt at the same time? Does it leave purple scars. These are all very indicative of DH but not exclusively. Did you know it is possible to diagnose celiac disease by positive biopsy next to a DH lesion? They take the biopsy not of the lesion itself but of the skin immediately adjacent. Did you discuss this rash with your doctor and have you seen a dermatologist? You see, we are so nosy here, and ask you so many questions

Yes, insulin and thyroid problems, abdominal pains, depression, weight gain have all been linked to celiac disease, as is a family history such as yours with other autoimmune diseases. But fear not. Just as it is never too late to give up smoking, it is never too late to give up gluten (which is what I assume you meant when you said 'glucose intolerant'? I didn't learn enough about gluten and figure out I should give it up until I was in my 60's. Do you have diarrhea and/or constipation along with your abdominal pains? Tell us some more about your symptoms, because as I said, we want to know everything!!! The more you tell us the more we can help you figure out.

[Rdv22222]

Hello! Thank you so much for your reply!

Yes, I did look at the photos of DH online, and it looks like mine. I understand that there is a skin test, but I'm waiting first for the blood tests since my doctor wanted to start there. Also, he mentioned a colonoscopy and and endoscopy. I am afraid to have both, and at this time I don't have insurance. I know I should have a colonoscopy since I am 51, but I really want to start the diet to see if it makes a difference. Do you think I should get these invasive tests done to see if I have tumors, etc?

I have loose or soft stools and they seem greasy and smell. They are lighter colored, mostly. My skin itches on my scalp, my elbows, arms, buttocks, anal area, legs, neck, etc. All this started a few months ago.

I first went to the doctor in March when I noticed a "burning" sensation on the left side of my upper abdomen. I was told I should take tums. Then, in April, I had a bad stomach ache and went to the ER. I also had back spasms. I had lifted some heavy things at work that day and then had lunch. They gave me a "numbing" solution and put me on tramadol for pain. I was fine by 10 p.m. that night. The doctor said I had GERD and a back strain. He prescribed Prilosec, and I have been taking it since then and was feeling great! I have been exercising and balancing my carbs/proteins and drinking pure water and low carbs/no sugar. I've been eating a lot of wheat and whole grains!!! I've been under a lot of stress this year, also.

However, two weeks ago, I didn't have the money for more Prilosec and decided to try to go off it. Then, I started experiencing weird pains, sensations in my upper abdomen, that would sometimes shoot to the back. I thought it was gallbladder. Now, it has settled down pretty much after being on it for the 14 days, but I still have some pains/bloating, and full feeling.

As I said before, I am fearing the worse. I think I will feel better when I get the blood tests back. Should I request a skin biopsy? Should I definately get an endoscopy?

Thank you so much! It feels good to have someone that cares to chat with! Take care, too!

[Hopeful1950]

I did the blood tests and they came back negative as is often the case with DH. I got a skin biopsy and it was positive. I stopped there because I read in Dr. Green's book that a positive skin biopsy is a diagnosis of celiac and endoscopy is not necessary. If you are low on cash or your insurance doesn't pay for the endoscopy, the skin biopsy might be a less expensive (and less invasive) way to go. Just make sure that the biopsy is done on the skin next to an active lesion, not on the lesion itself. See what your doc says.

Good luck in your search for a diagnosis. It took me 7 years.

[Rdv22222]

I did the blood tests and they came back negative as is often the case with DH. I got a skin biopsy and it was positive. I stopped there because I read in Dr. Green's book that a positive skin biopsy is a diagnosis of celiac and endoscopy is not necessary. If you are low on cash or your insurance doesn't pay for the endoscopy, the skin biopsy might be a less expensive (and less invasive) way to go. Just make sure that the biopsy is done on the skin next to an active lesion, not on the lesion itself. See what your doc says.

Good luck in your search for a diagnosis. It took me 7 years.

Thank you very much! Take care!

[Kay DH]

I also would recommend the skin biopsy before the endoscopy. Not all DH shows up as GI damage. The skin biopsy is less invasive, but make sure you find a doctor that knows how to do it correctly. Problems with gluten extend beyond GI and skin issues. I had problems with mood swings, depression, and brain fog that started going away a few days after going gluten-free; they kick in if I've been glutened hard and then go away in a few days. Your stress and depression can make the Celiac symptoms worse, but the opposite is also true. Life after gluten is much better.

I had the blood test twice, and they came out negative. Not uncommon with DH. I probably have DH but it is mild, if you call extreme itching in a smaller area mild. I've shown it to numerous doctors over the last 30 years with no diagnosis and not tests. So, I just lived with it until I got the flu and extreme stress last fall, and GI and mood symptoms started. I went gluten-free one month later. GI symptoms went away in a week, joint stiffness in 1.5 months, and the rashes in 6 months. I had the colonoscopy/endoscopy in April, but the GI only had me on the gluten-full diet for a week and took one biopsy. Also negative. The doctor was positive I only had diverticulosis, NOT. So, the endoscopy/colonoscopy was negative except for minor symptomatic GERD, but I know I don't have any other problems than gluten. So, sometimes you just have to go on symptoms for self-diagnosis. My close relatives are not going to be tested for Celiac in spite of their GI problems, partly because of the possibility of being excluded from insurance (it will be nice when this goes away with the Health Reform).

[justducke]

I was told I had DH this spring after a biopsy. I have tried to be gluten free although on occasion I will get some gluten by accident. I usually begin to itch fairly quickly but don't always break out in those nasty burning blisters that I suffered with for over a year on my knees, elbows and other areas (sometimes). I do have panic/anxiety usually within about a half an hour after eating gluten now that I have been gluten free for a few months. Is that normal? Does anyone know if sleep disorders are also part of celiac?