Just Found Out It May Be Celiacs

[hspichke]

I didn't see this board when I joined yesterday, but someone on here mentioned it so I decided to come over here! I will post my EXTRA LONG post from the other board with my background, as I haven't been diagnosed yet, and include photos of my hands.

Okay, lets just start from the beginning. I have had diarrhea issues for the last 3 or 4 years (along with other symptoms) and I have been on the hunt for a diagnosis so I can start feeling better. I have had my symptoms blown off by numerous Drs and it seems I am getting close to a diagnosis but I am so completely confused at this point. I will start with a list of symptoms, severe diarrhea, stomach cramps, endometriosis, hair loss, severe blistery itchy skin rash on fingers and elbows (Have an appt w a Derm on Jan 6th), extreme fatigue, fevers, sweating, tremor, joint pain in knees, bad "growing pain" feeling in thigh bones almost every day, headaches, mouth sores, nose sores. I think that is it... Anyways I will start with almost 3 years ago after my son was born....I was feeling ill and finally decided to be seen, he diagnosed me with temporary hyperthyroidism from the delivery of my son and said it would go away. After 4 months it did go back to normal but I still had symptoms. They would sometimes be horrible, sometimes be bearable but I dealt with it. I got pregnant then again with my son who is now 9 months old and it seems after him everything got MUCH worse. I had stomach pain and diarrhea and fatigue the last couple years before that but I just dealt with it. After having my 9 month old I went to the Dr in July complaining of most of the symptoms I listed above. She told me "since you are having symptoms in numerous systems of your body it is all in your head" and sent me on my way. I had a hard time believing this but I said okay and went home. About a month later I was having a lot of pain in my left forearm and ended up going to the ER, after an ultrasound the Dr said "we THINK you have a blood clot", and suggested I go back to my Fam Practice Dr to see if there could be a clotting issue. After doing a few blood tests one was positive, Antiphosphilipid Antibody Syndrome and she told me to take aspirin daily and then come back in 4 months for another blood test since it was a weak positive and there needs to be two positive tests to confirm. I will be getting this test again next wk. She told me she would be sending me a package of info about the disorder and when I got it I saw that there was a tie between that and Lupus. I researched Lupus and noticed I had NUMEROUS symptoms so I contacted a new fam practice Dr to discuss it. He thought it was possible but ran blood tests and since my ANA was negative he said it was not Lupus. I guess 95% of people with Lupus have a positive ANA. Over the last 2 months my diarrhea issues have become unbearable. I sleep on the bathroom floor and take Percocet for pain and that doesn't even help. I am miserable. I went to my OB/GYN since I have endometriosis and asked if it could have spread to my intestines, she said this was possible and sent me to a GI Dr. He ran a few blood tests and they came back showing inflammation.. I will post the copies here....

C reactive protein - 5.9 and then he called today saying that he "missed" this.. t-Transglutaminase (tTg) IgA was 57. He has originally suggested that my endo probably did spread to the bowel, however now said something about celiacs and told me to come in for an appt to discuss. I have an appt Jan 10th but in the mean time my OB/GYN wanted to start me on Lupron injections to shut down my ovaries and put me into menopause (it is a dangerous drug) to stop the endo from spreading further. I am a 24 yr old woman with 2 small children and do NOT want to go through menopause and risk side effects if this is not necessary. I also am waiting to get into the Lupus Clinic at University of Minnesota Medical Center. HOWEVER, I see Celiacs symptoms are similar to those of Lupus and I think this may have been my issue all along. Does anyone have any advice, suggestions, insight? Anything would be appreciated I am BEYOND STRESSED!!! Thanks!

Now, for the "rash". Since the Drs have been thinking Lupus for a while I thought it was Lupus related but after finding out I probably have Celiac disease I have noticed a rash is quite common with it. I have a derm appt on Jan 6th but chances are my rash will be gone by then. So I'm not sure if they can do a skin biopsy then or not? This started a few yrs ago with a couple bumps on my fingers, it comes and goes every few months, every time there wouldbe more. Now I have it covering my fingers, some on my hands, all over my elbows, and it has spread to my toes. I will include a photo. Look familiar?

Sorry for the large photos, I don't know how to make them smaller on here..

[squirmingitch]

Hi. I'm rather new here myself so your situation is sort of out of my league. I have dh & therefore have celiac disease. The celiacs with

dh generally have less GI symptoms & damage because the disease manifests more in the skin. BUT that does not mean that in your case you

don't have both. I really just wanted to tell you that these are a great bunch of people on here with a great deal of knowledge. So just

sit tight & hold on because they will be on to help you with your questions soon.

As to the photos some of the places look very much like my dh. Do I see a small blister there such as the one near your big knuckle

on your right index finger?

[hspichke]

Hi. I'm rather new here myself so your situation is sort of out of my league. I have dh & therefore have celiac disease. The celiacs with

dh generally have less GI symptoms & damage because the disease manifests more in the skin. BUT that does not mean that in your case you

don't have both. I really just wanted to tell you that these are a great bunch of people on here with a great deal of knowledge. So just

sit tight & hold on because they will be on to help you with your questions soon.

As to the photos some of the places look very much like my dh. Do I see a small blister there such as the one near your big knuckle

on your right index finger?

Thanks so much. And yes, these were a couple days ago on my cell phone so not the best photos, but I have quite a large blister on my right had middle knuckle, and a small one on the left hand middle knuckle. I also have formed a few larger blisters on a couple fingers and some small red bumps all around the other areas, as well as my elbows and toes. And now I have two on my ankles also.

[itchy]

By your symptoms and the photos you certainly could have DH and be celiac. The range of symptoms can be quite broad. Do the blisters sting or itch like crazy?

That would certainly be a sign. Also the lumps seem to be on your knuckles. I've never heard of that before,

but it often strikes knees and elbows, so knuckles would be similar.

If the dermatologist wants to biopsy your skin to test for DH you may want to continue eating gluten containing foods, because

the test may/will be compromised if you are eating gluten free.

Otherwise you might consider starting a strict gluten free diet and see if it works. In my experience it is getting the last

bit of gluten out of your diet that has the most effect.

Reading through past posts you will notice that tests aren't very reliable, and many physicians aren't very knowledgeable about

DH. Including dermatologists. Knowledge is power.

Best wishes!

[hspichke]

By your symptoms and the photos you certainly could have DH and be celiac. The range of symptoms can be quite broad. Do the blisters sting or itch like crazy?

That would certainly be a sign. Also the lumps seem to be on your knuckles. I've never heard of that before,

but it often strikes knees and elbows, so knuckles would be similar.

If the dermatologist wants to biopsy your skin to test for DH you may want to continue eating gluten containing foods, because

the test may/will be compromised if you are eating gluten free.

Otherwise you might consider starting a strict gluten free diet and see if it works. In my experience it is getting the last

bit of gluten out of your diet that has the most effect.

Reading through past posts you will notice that tests aren't very reliable, and many physicians aren't very knowledgeable about

DH. Including dermatologists. Knowledge is power.

Best wishes!

They are crazy itchy and painful. I haven't changed my diet at all yet, I don't want it to change any of my tests since I haven't been diagnosed yet. Do I need to have the bumps for a skin biopsy? (I assume so but I'm not sure how that works) They typically only stay for a wk or two then I don't have them for a month or two, so I don't think I will have any at that time.

Yah I have never been to a derm for this but I have asked 3 or 4 drs throughout my life when I happened to have some bumps while at appts and none of them had any clue what it could be. Thanks

[squirmingitch]

This is really hard to read because one has to move the page back & forth as the posts are running wider than the screen.

The blisters are typical of dh & they itch like *&^%$&& & then some! And the places seem to get real hot or burning or stinging feeling.

There is a 37% false negative return rate on the skin biopsy & that's IF the derm knows how to do it correctly. As far as the GI goes you will

have to be eating gluten for tests & yes, they can turn out false negative.

Don't give up the ship. IF your tests turn out negative then you can always do your own test by going gluten free & seeing what happens.

I suspect you may already have more issues going on here than celiac/dh. But as I said others know much more than I & I will let them

come to their own conclusions.

[Di2011]

Open Original Shared Link

" Patients typically present with a waxing and waning, pruritic eruption

on the extensor surfaces of the arms, knees, and buttocks. It may become generalized."

This sounds like it would fit your presentation. Generalized to your hands but obviously spreading.

Mine started at the ankles, made its way up and all over (not just "arms, knees, buttocks",

progressed down arms to hands. I am hoping like crazy that this might mean it has nowhere left to go.

Read through all the tabs of the link above. You will learn about DH from this site.

These might be worth taking to the derm (with your pictures - take lots more including those on other areas):

Open Original Shared Link

"The biopsy sample should be taken from the edge ((not the actual lesion, next to!!!)) of a lesion for

hematoxylin and eosin staining and from normal-appearing perilesional skin for direct immunofluorescence staining."

"Inflammation in lesional skin degrades the immunoreactants and is usually negative for the diagnostic granular

pattern. Because deposits are found more reliably in the surrounding normal-appearing skin, the standard practice

is to obtain biopsy specimens from normal-appearing perilesional skin for direct immunofluorescent staining. "

Open Original Shared Link

"Dermatologists usually use what's called a "punch biopsy" to remove the skin and test it for dermatitis herpetiformis.

After injecting a local anesthetic, your dermatologist will use a tiny, cookie-cutter-like punch to remove a 4mm

sample of skin. The incision can be closed with one stitch and generally heals with very little scarring.

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin

condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the

suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the

lesion can destroy the IgA deposits."

Open Original Shared Link

[itchy]

Remember that negative test results do not guarantee you don't have DH.

There are a lot of false negatives.

[mmmikes]

Hi, I don't even know if your still on this site or not cause its been quite a while but I just ran across your picture and my hands look the exact same. And so I was wondering if you ever found out what you had. Ive gone to a couple dermatologists, but all they told me was that I don't have arthritis and that I have a form of raynouds disease, however I believe theres something more to it because of the small blisters and bumps i have on my knuckles. So I just am really curious if you ever found out what you had.