Need Testing Again!

[Rustywrench]

Howdy everyone. I started lurking when I finally decided to look this up recently. Thanks for posting!

Here is the back story:

30+a few years female with the following symptoms...

Rash on arms, legs that comes and goes since age 12. ( has been diagnosed twice as eczema and once as DH) I wouldn't say it looks exactly like photos of either, but it is located in same areas, the boil looking dots itch all the time and we always thought it was a fabric softener issue. Well, for twenty years it's not been that.

When I was 13, I dropped a significant amount of weight after a real bad summer of cramping, bloating, Diarrhea. Parents didn't take me to doc cause it was sporadic. Fast forward to age 17 and I ballooned to 170 pounds from 140 in just a short period of time. Nothing different in my diet or exercise.

By 19 I was in the military. Rash on arms and legs was a lot worse! A doc in the medical clinic did lots of allergy tests, basic blood work and came back with "gluten intolerance". He said, don't eat gluten and you'd be fine. Wth is gluten? Internet was for the rich, not a poor E3. So I didn't look into it. I was okay I thought.

In that time, I learned I could not eat pizza and drink beer the same day. Throwing up blood was the result. So I fixed that by drinking rum instead of beer. What can I say, I was an idiot surrounded by idiots.

For the last 15 years, I have struggled with my weight. I seem to platuea at 180. Never can get below; but gaining is super easy.. The worst I got to was 217 before I started a low carb(no bread/pasta) type diet. Got me back to about 180.

Constantly fatigued, depression happens easy, skin rash and acne is really bad when I overdue the breads and beers. Charliehorses in my calf muscles often. Bloody noses, chronic constipation, Migraines haven't happen in a few years though, chronic sinus issues,hands and feet are chill cold all the time, my muscles ache forever and a day, bruise really easy and my iron is very low(blood tests stated again). I had a form in my medical record stating the doctors finding of gluten intolerance but it is missing! On one sheet I have states the history of DH.

I was overseas last year for my work and I swore I was getting scurvy after the first 6 months! My gums were bleeding, my teeth ache from cold and heat.. As a matter of fact my molar sealants need to be replaced again as they wore out.It's only been two years since that was last done. I try to take multivitamins each day but it makes no difference. When I came back to the states, I was able to eat salads, fruits and non-prepackaged foods. Made a quick difference in my teeth, but still extremely sensitive to hot and cold.

So... Now I need to find a doc soon to get the tests again. I want to hear it from them, though I know I can get false report back. I plan on going on a gluten free diet ASAP but need to get this test out of the way.

I went to Ireland for a 20 day vacation last summer and of course I ate bread, potatoes and beer every day the entire time. I broke out in one of the worst acne and skin rash attacks I have ever had. I went home and went back down to a low gluten diet(not gluten free) and everything cleared up in a month or so. I shoulda known better!

So, next chance I get I will get tested. Might have to wait as I have to resume a regular gluten diet. I don't think I eat enough now to give an accurate reading.

How long did you go on a "gluten" diet before going to doc? - I know there are some who instantly had major medical issues... I am curious of those who experienced simular symptoms.

Any suggestions from those experienced?

Thanks.

Btw- both parents have developed diabetes at the same time. Mother has had a recent thyroid diagnosis as well.

[pricklypear1971]

How much will you pay me to hear "you have Celiac Disease"?

Oh shoot, I'll say it for free. You have Celiac Disease. A military doctor told you so (which is a minor miracle in itself).

Just because they lost the form doesn't make it less true; plus, you have the DH dx, still.

A DH dx is a Celiac dx.

You do need to visit a doctor, to get vitamin panels run to gauge how damaged your intestines are: iron panel, b's, calcium, magnesium, k, zinc, d. You also need a diabetes panel and a full thyroid tsh, free t3/t4, TPO.

Then supplament, repeat blood tests in 6 months.

Then you need to get to a dentist.

And before, during, and after those visits you need to go gluten-free 100% of the time, 24/7.

No one can tell you what will happen when you go on a gluten challenge - everyone is different. Some people can do it, others can't - and you're supposed to eat a glutenous diet for 2-3 months.

[Rustywrench]

I appreciate your reply.

I agree, I am sure I have it. I am just wanting the test as additional information. I suspect my immediate family may as well, all are lactose intolerant, and have a few simular symptoms.

I have a dentist appointment set up, but it can take some time as scheduling isn't instant. Trust me, I would love to go in to the dentist today.

I am setting up a nutritionist appointment as well. I hadn't thought to get thyroid checked, last time I had that done was in my mid twenties. And I agree about another blood panel for vitamin deficiencies.

I wish I did all this back when I was 19!. Now, hopefully I can get healed with a proper diet.

[sharilee]

I have never done the gluten challenge but from what I have read from others here, some have been able to do it and others have not. You need to get retested again as soon as possible. If you can't get retested soon, at least consult with a doctor and get some idea of how long you might have to have gluten for a test to be accurate.

In my family, I am the only one with thyroid issues and celiac. Everyone else has type 2 diabetes. My blood sugar levels have always come back normal.

I was diagnosed with celiac two months ago. Some of my symptoms got better after going gluten free but still having issues. So now working on an elimination diet (all natural gluten free, no soy, no lactose and no caesin) and then going to slowly re-add items and see what else I might have an intolerance to.

[mushroom]

As pricklypear says, you do not need any more testing, you do not need any more diagnosis, you do not need any more gluten, a diagnosis of DH means you have celiac. I can't imagine why you would continue to torture yourself with gluten. That's like saying, I have been diagnosed wotj pneumonia, and I know if I stand out in the cold stark naked, it will get worse; for how long should I stand out in the cold so I can be sure I have it It doesn't make any sense.

Make yourself better by quitting gluten now. You will probably find that those pesky pounds you keep gaining will start dropping away too.

[pricklypear1971]

I appreciate your reply.

I agree, I am sure I have it. I am just wanting the test as additional information. I suspect my immediate family may as well, all are lactose intolerant, and have a few simular symptoms.

I have a dentist appointment set up, but it can take some time as scheduling isn't instant. Trust me, I would love to go in to the dentist today.

I am setting up a nutritionist appointment as well. I hadn't thought to get thyroid checked, last time I had that done was in my mid twenties. And I agree about another blood panel for vitamin deficiencies.

I wish I did all this back when I was 19!. Now, hopefully I can get healed with a proper diet.

Many of us have tried for a piece of paper saying we're Celiac in hopes of convincing family members to get tested. It doesn't work as often as we'd like. It seems to be more effective when patents use it to get minors tested. In short - they either will or won't - you can't make them.

If you think you need a piece of paper, perhaps you should talk with a doctor who will write the dx in your file. That way, you don't need to go through the pain of a trial.

I hope you have good luck with a nutritionist; I hope you've found one experienced with Celiac - since not all are knowledgeable about Celiac. They should be, but aren't. If the info you get seems a bit off, please research it.

[Rustywrench]

Okay, I agree with you. Glad you brought that up! I am not gonna try the challenge. I already know gluten is a problem for me so now I am focussing on eating healthy for once in my life. No need to torture myself anymore then I already have.

Next up, blood test for vitamin deficiency and to figure out how to stabilize my iron.

Nutritionist as well. I am a typical American with the typical bad diet. Time to fix this!

Thanks for your insight! I appreciate your experience.