Celiac and Neuropathy

[Dyverg 0]

I'm 44 and have suffered from random blistering on my back side since I was at least 19. It was diagnosed as shingles, but I could never understand why I got it so often and why it would manifest on different sides at different times. I have gone to the doctor for constant aching and always being so tired, but no one ever really listened. I always have headaches and just counted myself as one of the lucky ones. And then there were the tummy issues. If I wasn't experiencing one end of the spectrum, I was totally on the other end. I didn't realize until recently how the stomach issues had gotten so predictable till my new husband noted my time limit on how long I could stay out after having gone out to breakfast. I generally have 30-45 minutes after the first bite. That's when I realized just how Ill i was getting, consistently and at times, predictably. I have had stomach issues for so long that I just took it for granted that it was how my stomach did things and if I would only pay more attention to how much water I drank or didn't drink, or the grease that was ingested, or the amount of fiber I took in. I figured I was just lazy at figuring out what I was doing that others didn't.

Last year I made a huge effort and lost 43 pounds. I thought since I was losing weight I must be doing my body right, feeding it good healthy things (i've never been a junk eater or fast food, but I have worked in a bakery and I do love the sweets!) . Since I still felt miserable all the time I again figured it must be just the way I am.

Then, 2 days ago, I was coming down with a cold. I was in bed and realized i was feeling the itch of yet another bout of blisters. Frustrated, I searched "random blistering on back" and came up with all this information regarding gluten intolerance. The next day, I made a bowl of tabbouleh for lunch and ate it all while reading the new found information. I spent the next 7 hours thinking I was dying. First the bloating, then aching, and then the world came unglued. I lost 3.5 pounds that day alone. This morning my stomach still hurts but I can live with that. The problem now is I'm terrified to eat anything! All of the celiac disease symptoms are me!

I went to the grocery and focused on fresh veggies, got some gluten-free marked frozen dinners and some gluten-free rice cakes. The forums seem to say get tested, but doing that will take time and may not even be conclusive from what I read. Seems easier to just attempt the diet since I CAN'T go through again what I did yesterday! I don't know what to do! Then, once I get past this, what about gaining weight? all the gluten-free products seem awfully high in fat and carbs. I'm confused, scared and too uneducated to figure out which direction to go next. Help?

[mushroom 1,209]

Hello, and welcome.

You can get the celiac blood tests done right away. Just call your doctor's office and ask them to fill out a slip for the laboratory requesting celiac testing (telling them why - and because you want to be able to stop eating gluten soon!) and take it to the lab. Also, if you currently have any active lesions, go to a dermatologist and ask him/her to biopsy the skin immediately adjacent to a lesion to test for dermatitis herpetiformis, the skin form of celiac. Do not let them take the sample from the lesion itself because the antibodies are in the adjacent skin. If the skin biopsy comes back positive, no more testing is needed - you are celiac. If the blood comes back positive they normally want you to have a confirming endo with biopsy, but this is entirely your choice whether you take this step or not because it means you have to keep eating gluten until they can schedule you. With the skin lesion, as long as it is active (iodine will make it worse) it will be valid whether you are eating gluten or not. Blood test and biopsy both require you to keep eating gluten up to the time of testing.

Good luck on getting testing done soon.

[pricklypear1971 355]

Ditto what mushroom said...

And you don't have to eat processed gluten-free food. I don't eat much...just a piece of bread here and there, a bagel once a month... I bake occasionally, and do have a love affair with tamales and corn chips. Used to be chocolate - go figure!

And if you are suspecting DH, try a low iodone diet. It can help tremendously to put out the rash. Google "thyca" for info.

[Booghead 4]

Mushroom is very smart. Knows way more then most of us. Do have the skin biopsied, much quicker then an egd. Looks pretty cool too! Hope you start feeling better.

[Dyverg 0]

Would you believe I have a dermatologist appointment this morning that was scheduled over three months ago!? Hope the blisters are as far along or not so far along, that there is a conclusive result. I have two separate patches going at present. And I hope that if I am given any resistance regarding the test, I'm strong enough to insist. Here goes nothin'!