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Recent Tests And Results - Suspecting Celiac.

Woolygimp

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Woolygimp Contributor
Woolygimp
Posted

I was born into a family with a history of several diseases. Thyroid disorders, coronary disease, and autoimmune disease (Rheumatoid Arthritis).

For the last 3 years my health has deteriorated, being 17 at that time. Fast forward to about 2 months ago, about the time I discovered Celiac. I decided to give the gluten free diet a try, and about 2-3 weeks later I was able to get an appointment with a Rheumatoid Arthritis specialist who did an antibody panel for Celiac. I continued the diet, then when the results came back several weeks (negative) later I discontinued and resumed eating whatever. Another blood panel taken soon after showed extremely elevated liver enzymes, and I was negative for Hepatitis.

Now during these last two months I'd like to talk about some of my symptoms. During my childhood I had a massive appetite but an even greater metabolism. I could eat anything, and I'd still remain 'thin as a twig'. At 17 or so I was about 135, and when my health took a turn for the worst it also happened to bump up my weight to the general area of 185. When I went on the gluten free diet I was down to about 170, and now that I'm off it I'm weighing in at 193 or so. I don't know whether to attribute this to healthier eating, but there was definitely a difference.

I'm constantly bloated, and I've got intermittent diarrhea. When I was on the gluten-free diet the bloating did subside, and the diarrhea continued but was less frequent. Instead of 4 times a week, it was only 3. Then the next week it was only 2... I'm going to have to say I noticed a difference in that department.

Then the liver enzymes, my tests which were taken while off of the diet came back with sky-high liver enzymes. I'm going in tomorrow for an ulstrasound but it's definitely not Hepatitis. I'm glad the test finally came back positive, so we have a lead, and I've read that Celiac most definitely causes liver problems such as Fatty Liver.

Anxiety. It's gotten bad, and I've been getting hot flashes (as a male) in places such as when I go out, or anytime I'm in a public place around a lot of people. It's not that I'm worried or anything, but it appears to be subconscious. I literally feel the heat burning inside me, it feels like someone put a lot of that Icy/Hot stuff all over my body... I can feel like I'm 110 degree weather, being in a 78 degree room. My internal temperature doesn't jump up when this happens though, as it tends to stay at around 98 degrees. Anxiety medicine started helping me immensely, and other symptoms like dry eyes/dry mouth were immediately taken care of after taking the medication. However the stuff I'm taking (.25mcg of Niravam) has started to have a lesser effect. Even taken multiples, it feels like I've built up an immunity to it and the hot flashes are coming back.

I also had a pop up, and when I went on the diet the rash (on my chest/back) started to fade out. The rash itself is odd, as I can peel the tops off, sort of like scabs and I wouldn't say 'pus' comes out but some liquid. They regrow, and the rashes themselves depending on how bad they are can be painful as hell, and itch. Went to a Dermatologist today, and he said it's most likely folliculitis, as DH usually appears on the elbows and knees but he said if it gives me a peace of mind he has no problem doing it. He asked me why I suspected Celiac, and he sounded interested. The biopsy was taken, and they'll run the test on it and get back to me.

When I went on the diet, and then went back off of it I didn't notice any symptoms immediately. I didn't have immediate diarrhea, or stomach cramps. Nothing like that. I started feeling worse over the period of weeks, not days. You guys sound like if you have gluten it's like BAM!

So hows it sound? Should I expect the Dermatologist biopsy to be the end all test, and is there anyway for a false negative/positive on it?

I figure if it's acne, then it's not Celiac. If it's DH then it's Celiac (is this faulty thinking)?

Has anyone had any experience similar to this?

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Michi8 Contributor
Michi8
Posted
So hows it sound? Should I expect the Dermatologist biopsy to be the end all test, and is there anyway for a false negative/positive on it?

I figure if it's acne, then it's not Celiac. If it's DH then it's Celiac (is this faulty thinking)?

Has anyone had any experience similar to this?

I think you're right to suspect celiac. Regardless of whether you get neg or pos test results you should definitely continue eating gluten free if it's helping.

In terms of the DH test, it is very possible to get a false negative. If the doctor takes the sample from the wrong spot, you're pretty much guaranteed a negative result. The biopsy must be taken from healthy-looking skin beside the lesion (I believe it's within 3mm) for an accurate result. If you do get a positive for DH, then you definitely have celiac.

Michelle

Woolygimp Contributor
Woolygimp
Posted
  • Author
I think you're right to suspect celiac. Regardless of whether you get neg or pos test results you should definitely continue eating gluten free if it's helping.

In terms of the DH test, it is very possible to get a false negative. If the doctor takes the sample from the wrong spot, you're pretty much guaranteed a negative result. The biopsy must be taken from healthy-looking skin beside the lesion (I believe it's within 3mm) for an accurate result. If you do get a positive for DH, then you definitely have celiac.

Michelle

I'm pretty sure he took a lesion, because he said, "this looks like a good active lesion to take" or something like that. He knew what Celiac was, and he had an a med student with him who started going on about Celiac cases.

I didn't wanna be like, by the way this is how you do a biopsy.

Ok. I'm looking at my back. It looks like he took a sample at the top (most of the bad breakouts are at the bottom-middle of my back).

I see a I looking slight with a sittch over it. I don't see a lesion at all, and the closest red bump seems to be like > < away.

It seems like a long slit, so I have no idea.

Michi8 Contributor
Michi8
Posted
I'm pretty sure he took a lesion, because he said, "this looks like a good active lesion to take" or something like that. He knew what Celiac was, and he had an a med student with him who started going on about Celiac cases.

I didn't wanna be like, by the way this is how you do a biopsy.

Ok. I'm looking at my back. It looks like he took a sample at the top (most of the bad breakouts are at the bottom-middle of my back).

I see a I looking slight with a sittch over it. I don't see a lesion at all, and the closest red bump seems to be like > < away.

It seems like a long slit, so I have no idea.

It sounds like he took a sizeable sample, but if it is of the lesion itself it will come back negative. Perhaps if the sample taken had health skin too, and the lab is careful to test all of the tissue, you may get a clear result. I've read that the lab also needs to be experienced in testing for DH to ensure that the results are accurate. Unfortunately, not many dermatologists have enough experience in DH & celiac to do accurate assessment.

Michelle

Woolygimp Contributor
Woolygimp
Posted
  • Author
It sounds like he took a sizeable sample, but if it is of the lesion itself it will come back negative. Perhaps if the sample taken had health skin too, and the lab is careful to test all of the tissue, you may get a clear result. I've read that the lab also needs to be experienced in testing for DH to ensure that the results are accurate. Unfortunately, not many dermatologists have enough experience in DH & celiac to do accurate assessment.

Michelle

Maybe it's not DH.

My back looks identical to this, which is DH

Open Original Shared Link

However when you get closer, I'm noticing that a lot of pictures of Dermetitis Herpetiformis are small bubbley blisters.

My stuff is more of an itchy scab, that happens to be dry and crusty. It can easily be peeled off, and it underneath it's moist (watery) and then takes a few weeks to grab back into a large red mountain scab again.

Michi8 Contributor
Michi8
Posted
Maybe it's not DH.

My back looks identical to this, which is DH

Open Original Shared Link

However when you get closer, I'm noticing that a lot of pictures of Dermetitis Herpetiformis are small bubbley blisters.

My stuff is more of an itchy scab, that happens to be dry and crusty. It can easily be peeled off, and it underneath it's moist (watery) and then takes a few weeks to grab back into a large red mountain scab again.

I think there may be some variation in how DH presents itself, and how severe the outbreaks are. Hopefully your tests give you the info you need. Check out this website for information...they have some good pictures as well: Open Original Shared Link

Michelle

Woolygimp Contributor
Woolygimp
Posted
  • Author
I think there may be some variation in how DH presents itself, and how severe the outbreaks are. Hopefully your tests give you the info you need. Check out this website for information...they have some good pictures as well: Open Original Shared Link

Michelle

Does anyone have hypothyroid like symptoms, or on the opposite end severe anxiety to the point of hot flashes?

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