Diagnosis Negative But What Do You Guys Think?

[CBaker88]

Hello, I

[ravenwoodglass]

You should go to a derm and ask for them to biopsy specifically looking for DH. They will need to biopsy the area NEXT TO an active lesion not the lesion itself. A diagnosis of DH is a diagnosis of Celiac. It can take some time for the antibodies to leave the skin and even a small amount of CC will reactivate them.

For me the DH and the bone pain were a big part of my life for years before the gut stuff got to be more than an occasional annoyance. I did have to be very strict with the diet for them to go into remission but they did.

[rinne]

It does sound like it could be celiac, the tests are not reliable.

In my opinion IBS is a ridiculous diagnosis, what does it mean, Irritable Bowel Syndrome? So one day the bowel just gets irritated for no reason, I don't think so. Many people are given that diagnosis and find out years later that it was celiac, and they only find out after significant damage has been done to their villi. That damage is required for them to diagnose it, it is not necessary for you to have that diagnosis to change your life.

The reality, as you have described it, is that you are having problems with your digestion, it only makes sense to go to a diet that is easier on your body.

I wonder whether you have ever felt that you had problems digesting bread prior to this?

The other thing that struck me was that my illness began with pain that moved around my body and only after about two years of that did my digestion collapse, I feel that a tick bite (Lyme disease), is what triggered my celiac.

And having your rash biopsied is a very good idea.

I hope you can find some answers soon and start feeling better.

[CBaker88]

It does sound like it could be celiac, the tests are not reliable.

In my opinion IBS is a ridiculous diagnosis, what does it mean, Irritable Bowel Syndrome? So one day the bowel just gets irritated for no reason, I don't think so. Many people are given that diagnosis and find out years later that it was celiac, and they only find out after significant damage has been done to their villi. That damage is required for them to diagnose it, it is not necessary for you to have that diagnosis to change your life.

The reality, as you have described it, is that you are having problems with your digestion, it only makes sense to go to a diet that is easier on your body.

I wonder whether you have ever felt that you had problems digesting bread prior to this?

The other thing that struck me was that my illness began with pain that moved around my body and only after about two years of that did my digestion collapse, I feel that a tick bite (Lyme disease), is what triggered my celiac.

And having your rash biopsied is a very good idea.

I hope you can find some answers soon and start feeling better.

Thanks for the responses, guys/ladies. Yeah it's weird, as a little kid apparently I was diagnosed with a multitude of food allergies, all of which just sorta vanished over time. That was so long ago I really don't remember, maybe when I was 4/5 years old, but as long as I can remember, I have never had any allergies/problems eating any foods whatsoever, I could pretty much eat anything, although I am careful about my diet. It just sorta happened suddenly, out of the blue, and I think it was initiated by stress. My mom says that her entire family has digestive issues (she claims IBS), but it kinda suggests to me that there may be a celiac genetic connection in the family, although no one has ever been diagnosed. Especially since my grandfather just recently suddenly became lactose intolerant after drinking milk his whole life.

The annoying thing is that I went to a dermatologist outside of my insurance because I wanted answers and I was tired of waiting. At first he was sure it wasn't celiac, because he says people usually break out in hives (uhhhh...). So he thinks it's mastocytosis, does 2 skin biopsies which cost a bundle, and of course it comes back negative. Then when I go to get the stitches out, I tell him the gastro asked if he tested for DH. Then he says, uhhhh, well, honestly I don't see many celiac rashes and I really thought it was mastocytosis. UGH. This time i'll go through insurance, and push them to biopsy for DH.

The other thing was that this only started very recently, so I figured maybe I didn't actually have time to develop the villi damage. I guess I'm lucky that I've been so diligent about it, it's only been 5 months since the onset of all the symptoms, and it seems most people go for years and years. Really it was only through my own research that I came up with this though, no doctor brought up celiac as being a possibility, only IBD or IBS.

[ang1e0251]

I don't think the point is that it started recently. I think it's been going on for a long time and your body finally hit the tipping point and started complaining. My rash only kicks up again if I'm glutened. I would say that if your rash is ongoing, you are still eating "sneaky" gluten. What's your everyday diet like?

I also have had a lot of pain with celiac disease. The stricter I am about the diet, the less pain I have. That is not to say you may not have another problem but it seems like you have tested for the obvious already.

[CBaker88]

I don't think the point is that it started recently. I think it's been going on for a long time and your body finally hit the tipping point and started complaining. My rash only kicks up again if I'm glutened. I would say that if your rash is ongoing, you are still eating "sneaky" gluten. What's your everyday diet like?

I also have had a lot of pain with celiac disease. The stricter I am about the diet, the less pain I have. That is not to say you may not have another problem but it seems like you have tested for the obvious already.

Yeah, it's possible, I just mean the symptoms only started 5 months ago, and I've only been gluten-free for about 6 weeks, and 2 weeks ago I tried to go back on gluten for the blood test but felt like crap so that only lasted 1 day. I am very careful about what I eat, most of what I eat is not that exciting, fresh plain veggies, sauceless meats/fish, eggs/yogurt and rice/potatoes, I try to buy organic (yogurt for example) where necessary and I've been staying away from all boxed/processed foods. I always check ingredients on everything before eating it, but it's possible there may be some gluten hiding in gluten-free foods, such as the "gluten free" protein powder I take or for example the "gluten-free" snickers bar I ate the other night. The thing is it really seems like this rash is being triggered by foods, I just can't pinpoint what. I'm going to cut out all chocolate next, and see if that helps. Even though I barely eat it, my protein powder I take morning and night is chocolate flavored and has fake sweetener (sucralose), I'll switch to natural flavor, see if it makes a difference. Certainly the itching is not nearly as severe as it was, but little bumps do still pop up here and there every few days and itch enough to be slightly annoying. I have a doc appt tomorrow, I'll have him send me to a dermatologist and see what he/she thinks.

[southjerseygirl]

sounds like it could be celiacs. celiac causes inflamation of many parts of body, including (for some) the bladder, gallbladder, and even blood vessels. Have your doc check out your leg circulation. around here, we have specialists for that, but i can'r recall their titles. keep serching until you know. inflamation from celiac can cause a body havoc.

[ang1e0251]

Sounds like you have a very strict diet except for the protein powder. I would be suspicious of that. Can you cut that out for a month & see how you do? Then you can reintroduce it, if you wish, to test it. Even if all the ingredients sound ok, it could be on shared lines or shared factory space with gluten. To be honest, I don't always know what the problem ingredient is but I do know how I feel when I eliminate a problem food. What do you think?

[CBaker88]

Sounds like you have a very strict diet except for the protein powder. I would be suspicious of that. Can you cut that out for a month & see how you do? Then you can reintroduce it, if you wish, to test it. Even if all the ingredients sound ok, it could be on shared lines or shared factory space with gluten. To be honest, I don't always know what the problem ingredient is but I do know how I feel when I eliminate a problem food. What do you think?

Aha, actually I've been eating a lot of these homemade tamales from Cosco, supposedly no wheat products based on the ingredients, but this may be causing the problem. I layed off of them the last 2 days and noticed significantly less itching. But probably will have to give it some time to be sure, don't really think 2 days is long enough. I've noticed the protein powder doesn't seem to be causing any problem, but I'm still going to go to natural flavor, again 2 days isn't long enough. Ever since I actually started paying attention to what's in my food, it's really amazing how much crap is in processed food (Green Dye in Boxed Frozen Green Beans!!!!), so I've cut out all these foods, including the artificial sweeteners. I understand preservatives are necessary in some foods, but dyes in veggies? And there was red/yellow dye in my cinammon rolls I ate for my 1-day gluten challenge. I mean, come on.

In response to the above post, I had an IVP/CT scan where they injected me w/ contrast medium and checked for abdominal blood clots since I was getting this cold feeling in my abdomen/leg, so I'm pretty sure I'm ok. I think it may have been the knee inflammation causing the tingling problem in the lower leg, and neuropathy from the gluten.

[pele]

I'm going to re-emphais what has already been said: celiac tests are unreliable. In studies involving biopsy proven untreated celiacs, new blood tests miss as much as 35% of the time, in one study even more. Here's link to some recent research at the Mayo clinic

Open Original Shared Link

In addition, you can be gluten-intolerant without celiac disease. The celiac antibodies indicate destruction of the villi, but do not say anything about damage gluten imay be doing elsewhere in the body.

And to repeat again, you do not need a doctor's permission to eat gluten-free. If you feel better, you are on the right track. Stick with it and give your body a chance to heal.