Newby...what To Do Next

[dyankeetoo]

Hi to All: I'm a newby here...with lots of questions, but the one paramount question is...how can I convince my doctors to give me the testing? Follow are my list of health issues/diagnosis:

- cousin with confirmed Celiac

- Hashimoto's Thyroid Disease

- Hyperparathyroidism (surgery for one adenoma in April 2005)

- Vitamin D deficiency

- Igm Deficiency

- Stomach and bowel problems

- Huge weeping, itchy sores all over my body...first diagnosed with Staph, and when that was unresponsive to antibiotics, bullous pumphligoid, negative at biopsy.

I should mention that I've seen an Infectious Disease Specialist and an immunologist. Both tell me that I do NOT have Celiac because of one set of antibody tests done last January. But nothing else seems to fit.

I'd appreciate any suggestions. I'm at my wits end...so exhausted I can hardly put one foot in front of the other...and it's been 15 years now that I have looked for answers.

I've been trying to go gluten free for about three months now. Every now and then I think I've overlooked something, and I get horribly ill. I don't vomit, but I feel like I should, but it sends me to bed to sleep and sleep.

Best,

Laurie

[CarlaB]

Welcome!

Did they biopsy the sores on your back for DH? That would probably be the easiest way for you to get diagnosed. They take the biopsy from the skin near the sore, not the sore itself. A DH diagnosis, IS a celiac diagnosis.

I just set up and appt. and asked my doctor for the test to be done. I told him that's why I was there. I don't know why a doctor would decline that ... maybe others will have better suggestions.

My blood work was negative -- probably due to not eating much gluten at the time. Negative blood work does not rule out celiac. Be sure they do all five blood tests!

[tarnalberry]

You just tell your doctor to run the full panel on you. You're doctor works for you, not the other way 'round. (Doctor's don't always seem to react well to being reminded that they are the service provider and you're the one paying their fee - hence the one with the control to walk away from their service, or lack thereof. That being said, they are the ones who justify the test costs to insurance on your behalf, so if you want insurance to cover the costs, a little 'convicing' is a good thing. Here are the salient points that should convince a doctor who is reluctant:

1) third-degree relative with celiac (this is a somewhat weak argument on its own, though still a perfect valid one)

2) diagnosed vitamin deficiency (also a weak argument on it's own, though valid)

3) diagnosed autoimmune thyroid disease (studies seem to show something between 5-15% of celiacs have autoimmune thyroid issues (note: this was from a quick scan of the study abstracts, I need more time to read them more thoroughly))

4) improvement of symptoms when gluten is removed from your diet

'stomach and bowel problems' - you don't say what the problems are, so I don't know if they actually are something that would convince a doctor or not

Those aren't strong, blazing, flashing, signs, to most doctors. They're the subtle poking signs that seem to be pretty typical of adult manifestations of celiac, really. But they should be enough to have your doctor run the full panel of five tests, including serum (total) IgA.

Unfortunately, though, you MUST be eating PLENTY of gluten (~three slices of bread a day) for THREE months prior to blood tests. That's one reason why it may be much easier to be diagnosed by getting those sores biopsied for dermatitis herpetformis instead.

[Ursa Major]

Hi Laurie, and welcome to this board. It sounds like you've been pretty much gluten-free for three months now. Therefore the expected result of having the tests run now, would be false negatives, because your bowels should have healed pretty much by now if you have celiac disease. If I am right about the gluten-free diet, I wouldn't advise you to go back to eating a lot of gluten for months, just for the testing, you might get horribly ill.

The way to go would be, to go to your dermatologist and ask to be tested for DH. If that comes back negative, try Open Original Shared Link. You don't have to eat gluten for their tests, which are a lot more sensitive than the standard tests, anyway.

You also may need to eliminate dairy (and likely soy as well) before you'll start to feel better. When your villi are damaged, you can't digest dairy.

[Jestgar]

Hi Laurie,

The other option is to just diagnose yourself and completely remove gluten from your diet. You will do yourself no harm and may discover that you feel so much better that you choose never to eat gluten again.

[dyankeetoo]

Hi to All: A heartfelt thanks so much for your replies. Took me awhile to figure out why I wasn't getting replies in my email. Duh!

I am going to go back to my primary and demand testing for DH...I've been on three courses of antibiotics now, and am about to try Diflucan (from my holistic doc). The Immunologist won't see me anymore for what he calls excema (his only solution is to put me on Prednisone, and I've done that before and don't like what it turns me into; a screaming, bitter virago). The holistic doc is the one who's seem me most recently and he is really, really concerned that some of the sores will turn into an infection into my bloodstream, I've had them so long (one of them since January). The itching is almost more than I can stand. I must have about a hundred of them now, and new ones appear almost daily. Any pressure point; the wastband of my pants, the top of my kneehi's and I have new blisters under. When I wake in the morning the itching is darn near more than I can stand.

I had two of the tests done last January...and both were negative. I wish I had the exact description to hand, but I don't.

I THINK I've been gluten free for several months now...just eating meat, potatos and vegetables and avoiding anything prepared. I don't eat out, so that's not a problem. Tell me, is iodine a problem for any of you? I read on one internet site that exposure to iodine can make DH worse. Is that true? I'm a salt freak, I'm afraid, but I could go to Kosher salt if I had to.

Best,

Laurie

[tarnalberry]

I THINK I've been gluten free for several months now...just eating meat, potatos and vegetables and avoiding anything prepared. I don't eat out, so that's not a problem. Tell me, is iodine a problem for any of you? I read on one internet site that exposure to iodine can make DH worse. Is that true? I'm a salt freak, I'm afraid, but I could go to Kosher salt if I had to.

Iodine is an important component of the reaction that causes DH, so it is advised to significantly reduce iodine consumption (not just salt, but other iodine containing foods as well) until the DH fully heals after you've switched to being gluten free.

[happygirl]

If you have the bloodwork done and have been gluten free, or on the way to gluten free, your tests will not necessarily be accurate. You have to be eating gluten for an extended amount of time for the tests to be accurate (i.e., otherwise you start to heal, your numbers go down, and then it "looks" like you don't have celiac disease) hope this helps some. good luck.

[diamondheart]

I am going to go back to my primary and demand testing for DH...I've been on three courses of antibiotics now, and am about to try Diflucan (from my holistic doc). The Immunologist won't see me anymore for what he calls excema (his only solution is to put me on Prednisone, and I've done that before and don't like what it turns me into; a screaming, bitter virago). The holistic doc is the one who's seem me most recently and he is really, really concerned that some of the sores will turn into an infection into my bloodstream, I've had them so long (one of them since January). The itching is almost more than I can stand. I must have about a hundred of them now, and new ones appear almost daily. Any pressure point; the wastband of my pants, the top of my kneehi's and I have new blisters under. When I wake in the morning the itching is darn near more than I can stand.

I had two of the tests done last January...and both were negative. I wish I had the exact description to hand, but I don't.

Best,

Laurie

Hi Laurie,

If you have gone gluten free, you can still do the testing through Enterolab which is a stool test. If you are IgA deficient, the Enterolab tests won't help you much except for the genetic test. Which tests did you have done that were negative? A couple of the blood tests are also based on IgA antibodies, so again, if you have IgA deficiency, they aren't going to tell you much. I believe a IgG test for antigliadin is what you want. You can read about it on Open Original Shared Link page. You can also get tested for IgA deficiency through blood testing. Has your immunologist already done this? Sounds like you need to dump your current immunologist!

Taking antibiotics will also set you up for Leaky Gut Syndrome. I hope your holistic doc is putting you on probiotics. These are a must when taking antibiotics. If you have developed Leaky Gut Syndrome, then you may have developed other food sensitivities, that you will want to identify. Check out the Leaky Gut Syndrome forum here. I think I have it. Also, beware that taking antibiotics can set you up for other intestinal pathogens, like Candida (yeast) and an overgrowth of bad bacteria can return to colonize your gut. I don't mean to overwhelm you, but with all your symptoms and the length of time you haven't felt well, there could be multiple things going on in your gut that will need to be addressed for healing. I had to track these things down myself, and not rely on doctors to know which tests to run!

Claire

[dyankeetoo]

Thanks, Tarnalberry. I'd only seen this information once, on a doc's commercial site, so I wasn't sure it was accurate. Guess that means giving up the tuna, darn it, not to mention all that salt. Do you perchance have any links to research/abstracts that explain it in more detail? (I'm not a bad researcher, and I like to know the medical explanation.

Boy, the more I look into this, the more restrictive it seems to become. But I'd give up a heck of a lot to get rid of the holes I have all over my body (not to mention the scarring). My immunologist gave up...says that its excema. I've doc hopped so often now I've got records all over creation, and I need to stick with someone for the next time I get pneumonia or sinusitis.

Thanks again,

Laurie

Iodine is an important component of the reaction that causes DH, so it is advised to significantly reduce iodine consumption (not just salt, but other iodine containing foods as well) until the DH fully heals after you've switched to being gluten free.

Dear CarlaB: It seems that there are darn few docs who really understand this...in fact, it has become clear to me that there are few docs who can consider themselves experts on ANY particular disease, including the specialists.

No, as far as I know the biopsies that were done were for bulous pemphligoid/Mersa. The sores didn't respond to antibiotics (three courses of different ones, now), and they barely respond to steroid cream. I turned down the prednisone, as I have too many hormonal issues already.

I'll have to gather up what optimisim I have left and make an appointment. My primary will give me a referral to any specialist I want. Which, in your opinion, is the most likely to know what to do? A gastro, a dermatologist or?

Thanks so much...I really appreciate your taking the time to respond.

Best,

Laurie

Welcome!

Did they biopsy the sores on your back for DH? That would probably be the easiest way for you to get diagnosed. They take the biopsy from the skin near the sore, not the sore itself. A DH diagnosis, IS a celiac diagnosis.

I just set up and appt. and asked my doctor for the test to be done. I told him that's why I was there. I don't know why a doctor would decline that ... maybe others will have better suggestions.

My blood work was negative -- probably due to not eating much gluten at the time. Negative blood work does not rule out celiac. Be sure they do all five blood tests!

[dyankeetoo]

Hi, Ursula: Hmmm...soy and dairy. I have eliminated soy...never cared for it except in soy sauce, and I haven't used that in months (there's always wheat on the label). I don't drink milk...started having cramps from it 'way back in grade school, but I do love cheese and it's become a staple since I went gluten free. Is there something about cheese that make it digestable? I ask, because it hasn't bothered me in the slightest...in fact I eat cheese first thing in the morning because it's one of the few things that staves off the nausea without putting me to sleep. I have a strange reaction to sugars and carbs...just want to sleep, so I usually try not to consume much until my day is over. Needless to say, I've lost 20 lbs in the last couple of months (mostly in my ankles ~smile~).

This is scary stuff, having to be eternally vigilant, even reading lables on vitamin pills and antibiotics (BTW, do some antib's have wheat fillers, too? That would explain why I react so violently to some of them).

I am so grateful that you, and folks like you, are so willing to explain. My cousin, who is a confirmed Celiac, was really wicked helpful, too. We compared sores!

Best,

Laurie

PS...Thanks for the link to the lab. Do other docs accept the results?

L

Hi Laurie, and welcome to this board. It sounds like you've been pretty much gluten-free for three months now. Therefore the expected result of having the tests run now, would be false negatives, because your bowels should have healed pretty much by now if you have celiac disease. If I am right about the gluten-free diet, I wouldn't advise you to go back to eating a lot of gluten for months, just for the testing, you might get horribly ill.

The way to go would be, to go to your dermatologist and ask to be tested for DH. If that comes back negative, try Open Original Shared Link. You don't have to eat gluten for their tests, which are a lot more sensitive than the standard tests, anyway.

You also may need to eliminate dairy (and likely soy as well) before you'll start to feel better. When your villi are damaged, you can't digest dairy.