I Had Hoped To Never Return To This Place

[pricklypear1971]

I'll see if the dermatologist can fit me in tomorrow. How long does it take for the results? My D&C is scheduled for Thursday.

I have no idea, probably depends on where they send it.

[zus888]

Well, I'll call.

Y'all will enjoy this - Saturday's horoscope:

No matter where you go, there you are. Accept your lot in life. It might not be as much fun to be a designated driver, but you still serve a valuable purpose.

Gah! I'm working on it. It may take longer than most would like, but I'm working on it. And that's all I can promise.

[pain*in*my*gut]

Well, I'll call.

Y'all will enjoy this - Saturday's horoscope:

No matter where you go, there you are. Accept your lot in life. It might not be as much fun to be a designated driver, but you still serve a valuable purpose.

Gah! I'm working on it. It may take longer than most would like, but I'm working on it. And that's all I can promise.

Hey, Suz, I thought I would chime in on the hysterectomy thing. I am currently going thru something very similar. I have been having bouts of very heavy bleeding and I am having a D&C (to rule out cancer) and an endometrial ablation (to burn off my uterine lining) next week. If the D&C comes back abnormal, then I will have to have a hysto. But if it comes back ok, then I won't have any more heavy bleeding because I did the ablation. Has your doc mentioned an ablation to fix the bleeding? It's a LOT less invasive than a hysto!

Just thought I would throw that out there....

[Skylark]

I'll chime in too. My mom had a hysto for fibroids and they talked her out of having ovaries removed too. She really, really regrets the ovaries. Even after menopause they make some hormones.

[IrishHeart]

You have Primary Sclerosing Cholangitis, which is associated with celiac disease, and is apparently cured by a gluten-free diet.

I was reading about PSC before I posted to Zus' thread here--and I did not see this information anywhere. I did see some articles suggesting a link to celiac disease, but nothing stating that it was cured by a GFD.

This would be amazing! Can you post the source of this information for Zus here --so she can read it??

[Skylark]

I was reading about PSC before I posted to Zus' thread here--and I did not see this information anywhere. I did see some articles suggesting a link to celiac disease, but nothing stating that it was cured by a GFD.

This would be amazing! Can you post the source of this information for Zus here --so she can read it??

Um... no. Yes, PSC is pretty strongly associated with celiac disease. Interestingly, it is often diagnosed by biopsy rather than antibodies. One article documents that people with PSC are more likely have false negatives on the blood tests than other celiacs. Sadly, all the articles I've found specifically say the gluten-free diet cures the malabsorption and weight loss but not the PSC. Suzanna, I think you might have gotten lucky with a good doctor who knew to look for the celiac. I know you don't think it's luck at all, but as everyone has pointed out, you won't do well at all celiac malabsorption on top of liver disease.

I'd post links but I'm on campus reading full-text journal articles that are not publicly available so I can only offer the references.

Primary Sclerosing Cholangitis with Celiac Sprue: Two Cases

Fracassetti, Osvaldo M.D.; Delvecchio, Giacomo M.D.; Tambini, Roberto M.D.; Lorenzi, Natale M.D.; Gavazzeni, Giovanna M.D.

Journal of Clinical Gastroenterology:

January 1996 - Volume 22 - Issue 1 - pp 71-72

Celiac Disease Autoantibodies in Severe Autoimmune Liver Disease and the Effect of Liver Transplantation

Alberto Rubio-Tapia; Ahmad S. Abdulkarim; Russell H. Wiesner; S. Breanndan Moore; Patricia K. Krause; Joseph A. Murray

Liver International. 2008;28(4):467-476.

Association of primary sclerosing cholangitis and celiac disease: Fact or fancy?

Erik Schrumpf M.D.

Hepatology Volume 10, Issue 6, pages 1020–1021, December 1989

Volta U, DeFranceschi L, Molinaro N, et al. Frequency and significance of anti-gliadin and anti-endomysial antibodies in autoimmune hepatitis. Dig Dis Sci 1998; 43: 2190-5.

ASE REPORT: Association of Primary Sclerosing Cholangitis and Celiac Disease: A Case Report and Review of the Literature.

Al-Osaimi, Abdullah M. S., Berg, Carl L.

Digestive Diseases and Sciences (2004) vol 49 no. 3 p. 438.

[IrishHeart]

Um... no. Yes, PSC is pretty strongly associated with celiac disease. Interestingly, it is often diagnosed by biopsy rather than antibodies. One article documents that people with PSC are more likely have false negatives on the blood tests than other celiacs. Sadly, all the articles I've found specifically say the gluten-free diet cures the malabsorption and weight loss but not the PSC.

I'd post links but I'm on campus reading full-text journal articles that are not publicly available so I can only offer the references.

Primary Sclerosing Cholangitis with Celiac Sprue: Two Cases

Fracassetti, Osvaldo M.D.; Delvecchio, Giacomo M.D.; Tambini, Roberto M.D.; Lorenzi, Natale M.D.; Gavazzeni, Giovanna M.D.

Journal of Clinical Gastroenterology:

January 1996 - Volume 22 - Issue 1 - pp 71-72

Celiac Disease Autoantibodies in Severe Autoimmune Liver Disease and the Effect of Liver Transplantation

Alberto Rubio-Tapia; Ahmad S. Abdulkarim; Russell H. Wiesner; S. Breanndan Moore; Patricia K. Krause; Joseph A. Murray

Liver International. 2008;28(4):467-476.

Association of primary sclerosing cholangitis and celiac disease: Fact or fancy?

Erik Schrumpf M.D.

Hepatology Volume 10, Issue 6, pages 1020–1021, December 1989

Volta U, DeFranceschi L, Molinaro N, et al. Frequency and significance of anti-gliadin and anti-endomysial antibodies in autoimmune hepatitis. Dig Dis Sci 1998; 43: 2190-5.

ASE REPORT: Association of Primary Sclerosing Cholangitis and Celiac Disease: A Case Report and Review of the Literature.

Al-Osaimi, Abdullah M. S., Berg, Carl L.

Digestive Diseases and Sciences (2004) vol 49 no. 3 p. 438.

Yes, thank you Skylark (you are so good about posting journal articles for us), and I have read some abstracts of studies linking the two AI diseases, however...

I wanted the poster to tell us where she found the information that is

behind her statement that PSC is CURED by a GFD.

Unfortunately, I found nothing to support this claim.

But YES!!! Suzanna needs to stay off gluten to stop the malabsorption and autoimmune attack and keep her body in optimal health.

[cyberprof]

Yes, thank you Skylark (you are so good about posting journal articles for us), and I have read some abstracts of studies linking the two AI diseases, however...

I wanted the poster to tell us where she found the information that is

behind her statement that PSC is CURED by a GFD.

Unfortunately, I found nothing to support this claim.

But YES!!! Suzanna needs to stay off gluten to stop the malabsorption and autoimmune attack and keep her body in optimal health.

I too also read the articles earlier this morning and agree that there is no evidence that going gluten-free cures the PSC.

BUT...medical science isn't very knowledgable about PSC (compared to some other diseases) and IMHO doctors don't know much about celiac. It might be that being gluten-free would reduce the inflamitory process enough so that the PSC progression slows or stops. And if Zus gets a new liver, wouldn't a gluten-free diet keep her body from damaging the new liver?

Zus, I really feel for you. Not to harp on other posters, but to say "anything you want gluten-free you can make" in regards to dinner rolls underestimates the impact of avoiding gluten when one is out and about -PTA, business events, dinners at other people's houses and parties.

But, you have young children who may inherit celiac and/or the liver condition, and if nothing else, you can show them how to accept adversity with grace and strength. As their parent, that is up to you. And you want to be around for them for a long time. (Trust me, my kids are almost 19 and almost 21 and they still "need" their mother.) Going gluten-free is the best way to make sure that you don't get lymphoma or liver cancer or other cancers, and to preserve your current liver for as long as possible and finally to maximize the sacrifice of a new, scarce liver from a deceased donor.

Hang in there!

[Marilyn R]

I have to admit that I'm surprised that many of the responses are not what I expected to hear. So, I have been proven wrong in assuming I knew what all of you would say.

I've been given a lot of food for thought. Not just from you all, but also from friends.

I'm just trying to make some sense of my feelings. I know, rationally, what the correct thing to do is. I also know what I would tell my children. I know I need a new perspective, and, really, that's what it all boils down to. I am capable of doing the diet and sticking to it stringently. It's a matter of having the will to do it. It makes no sense that I'm doing so much to try to temper the one disease I have absolutely no control over and give in to the one I have full control over. It's not logical in the least.

I talked to a friend today who cried about her frustration and sadness about two people in her life that are making choices that only hurt them in the long run. And I could see my husband in her tears. She wasn't even talking about me. But the theme was the same nonetheless. I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.

I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.

I truly appreciate all the responses because it has really helped me to think through this.

Suzanna,

I read you post last night and bawled my eyes out. I posted and then deleted my post because I was so emotional.

I have wondered many times about you, and figured you'd improved and gone on to other things.

If you recall, we share similar symptoms from getting glutened. I remember that you said that you read a response of mine to your husband and that you both lol.

It's not funny anymore. A gluten-free diet could save you liver and life, so why not? Get a pressure cooker (I'm still a pia about that) and/or crock pot, and there are a world of recipes on the web.

OMG I am so sorry you are in a dark place and wish you the best, as well as your three little lovin' spoonful children. (You know they love you best.)

My DP and I (we're childless) have found we do best by arriving fashionably late and leaving early for family gatherings. We don't care if they talk about us, it gives them something to talk about. Wish you well, sista! Hope you go down the right road with the fork. You're a beautiful person and I wish the best for you and your family.

[Fiddle-Faddle]

My apologies--it is much muddier than what my initial impression was, when I first looked up PSC. If you like, I can edit my previous post.

It looks like PSC and celiac are strongly linked, and it SEEMS that untreated celiac actually causes the PSC? At least, that's the impression I'm coming away with. I didn't see a single case of PSC linked with celiac that had already been "treated" via gluten-free diet BEFORE onset of PSC, but maybe I missed something.

These were the studies I looked at earler. I think they all mention PSC. At least one of them specified that PSC is not reversed by a gluten-free diet. Others said that SOME liver diseases are reversed by a gluten-free diet. Most just discussed the reversibility of liver disease without specifying which liver disease until later.

But there's a lot we don't know here. First of all, the study that said PSC was not reversed by the gluten-free diet was from 1989. That's a long time ago. How strict was those peoples' diet? Did they cheat? Did they eat wheat starch? (Not sure if the study was done in Europe, where wheat starch is allowed on a gluten-free diet.) Did thye consume dairy? Alcohol? What else were they eating? Were they vitamin-deficient? On any other medications? Did they exercise regularly?

While I was obviously wrong to say that PSC can be cured by the gluten-free diet, I wouldn't assume for a second that there isn't a darned good chance.

How many of us were surprised to see our (rashes) (migraines) (dizziness) (tinnitus) (brain fog) (joint pain) (infertility) (alopecia) (thyroid disease) (_______) (fill in the blank) to reverse from diet alone? How many of us had doctors tell us that those symptoms had nothing to do with gluten, and that we would just have to live with them, or take medications for the rest of our lives? Heck, how many of us were told that our INTESTINAL symptoms had nothing to do with diet?

Again, I apologize for wrongly stating that a clear cure has already been recognized for PSC. But, given the odds here that we've seen with gluten and autoimmune disorders, I think it's premature to believe that a gluten-free (and cf) diet isn't at least part of the cure.

Open Original Shared Link :

[MitziG]

There was no biopsy taken, but these don't itch. They just aren't healing normally. They aren't oozing or anything, but if it were a normal scab, they'd be done and over with by now. Instead, they are still there. They hurt more than itch. And, it's not the skin that hurts. It's a deep hurt, like a bruise or something. Like someone hit me in the rib with a small rubber hammer. I figured they were bug bites since they don't have a rash-like appearance at all. There's just 4 little groups (one on my back, one on my flank, one on the abdomen, and one just under my breast - all only on the left side). Honestly, if you looked at it, you would not think rash either. You'd think a few ants had their way with me.

Oh dear...it does sound like shingles. My Celiac daughter got shingles this summer (she was 12) She was first diagnosed with impetigo as it was on her face. But it didnt heal on the antibiotics. after about 10 days she woke up with excruciating pain in her ear. She ended up being hospitalized for 3 days as it took them awhile to make the shingles diagnosis. None of them had ever heard of a KID getting shingles. But then, none of them knew a THING about celiac. Oh, and we did finally connect it to her eating gluten. She snuck a milano cookie and puked for two days. (First and last time she cheated!) The shingles followed about a week later. Anyway, she lost the hearing in one ear and had partial loss in the other. She had to get hearing aids. Dont mess around with shingles! Your immune system is telling you something...pay attention!

[Takala]

I'll chime in too. My mom had a hysto for fibroids and they talked her out of having ovaries removed too. She really, really regrets the ovaries. Even after menopause they make some hormones.

______

And you need those hormones to preserve your post-menopausal bones, which already can be challenged by celiac damage. Otherwise, minus the ovaries, you'd end up on hormone replacement therapy, and the imitation is never as good as the original, plus, the artificial form of progesterone is a notorious but little known depressant (as is birth control pills for some people). Or you could be told to take that bisphosphonate junk which is now associated with jaw bone necrosis (bone death) if there is any sort of tooth infection, plus other side effects like major fractures, erosion of the esophagus, and atrial fillibration. link: Open Original Shared Link

I had enough wrong with my entire set that the ob- gyn was willing to take everything, but I was only willing to part with the one bad ovary and its permanent cyst for starters, and that stopped the rest of it. The diet change had worked for a awhile with over- the- counter natural progesterone to get the endometriosis and fibroid pain under control, and there is plenty of information on the internet re: a low carbohydrate, Atkins, or gluten free diet to help control polycystic ovary disease and reduce fibroids. But the cyst/enlarged ovary was crazy fast cycling me every 3 weeks for a week or more straight of heavy bleeding, and that had to go. I also made sure that I described the difference in several different health problems pre and post diet change with this doc, in case he ran into any other patients with unresolved bladder and endo problems. How they initially found the ovary lump was accidental, I had gotten hit from behind by a snowboarder when skiing on a green (easiest) slope, and went airborne and then down very badly, landing on my hips, and was not sure if I had broken my tailbone or not, and had gotten scanned to see what was what and got a call back to go for more tests because the ovary wasn't normal.

( and I'm still pissed that the snowboarder wasn't acting very sorry about it, after I had done such an incredible amount of work to get to where I COULD ski again of all the stupid-***ed things to have happen, and I ended up limping again for several years because of that jerk. This past weekend, our first time out on man- made snow, green/blue slope again, two falling live bodies and 4 loose skis and poles shot past me in a spray of ice crystals at about 20 mph and missed.... it must not have been my turn this time ! To their credit, several teenagers also stopped and helped pick up the stuff while I liberally used my Mother of *** voice telling oncoming snowboard people not to run over them again. Freaking Idjiots ! )

To the original author of this post: I know you're claiming you are a "silent" celiac, but it turns out you have so many other health problems I'm going to disagree with that assessment. I have already somehow managed to outlive my one parent who died of liver disease over 40 years ago, by nearly 10 years. At the time of his passing, he left a widow with 3 small children under 10 years old. I cannot quite wrap my brain around the attitude that it's okay to deliberately sabotage one's own health in that situation, but I can assure you if my father had had any options at that time, he would have taken them to stick around a bit longer. Nobody gets guaranteed any specific amount of time. I may not have children, but I've outlived several sets of pets and several horses, and they don't get guaranteed any specific time, either, and some of them have had some interesting health quirks. I sometimes refer to the younger one as "scratch and dent," but I doubt he wants to off himself just because he was not blessed with the best hoof quality and an unfortunate metabolism which means he gains weight by just looking at grass hay and breathing oxygen. This horse has figured out he must drylot for periods of time during freshening green grass seasons, and actually will volunteer to come in for his diet sessions, and perhaps a personal pedicure where somebody does a quick rasp touchup to make sure his hooves are more balanced. He almost died at age 3 of a freak tick infection, erlichiosis, the vets caught it early and saved him with intensive care IV, because they had had 2 other cases earlier that week and he had the same symptoms. That changed everything in his story arc, as I had to call the lady up and tell her the horse she thought she was buying was in the equine ER and oh, well.... It changed mine, too. This is life, and I try to be half as patient and half as tenacious as they are. We are all just muddling through this environment and climate change, where things that were supposed to be good for us, turned out not to be.

"Where do you live, at what elevation?" they asked. That is strange, we've not seen it before around here, but his liver enzymes are definitely off, and we'd like your permission to try him on antibiotics, while we wait for more lab results. " This is how they saved my (almost sold) colicing horse who was on the verge of hemorrhaging to death internally at the clinic, sweat literally running off of him in buckets and shaking, and blood running fast out of every needle they stuck in him for another sample.

[zus888]

Um... no. Yes, PSC is pretty strongly associated with celiac disease. Interestingly, it is often diagnosed by biopsy rather than antibodies. One article documents that people with PSC are more likely have false negatives on the blood tests than other celiacs. Sadly, all the articles I've found specifically say the gluten-free diet cures the malabsorption and weight loss but not the PSC. Suzanna, I think you might have gotten lucky with a good doctor who knew to look for the celiac. I know you don't think it's luck at all, but as everyone has pointed out, you won't do well at all celiac malabsorption on top of liver disease.

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.

Going to the dermatologist today for the shingles.

[Jestgar]

As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.

I'm pretty sure ablations have to be repeated every few years, and will work best on one fibroid, that's on the surface of the uterus. It doesn't affect the submucosal, and isn't very effective for multiple fibroids.

Hormones did absolutely nothing for me. After my hysterectomy, my biggest regret was not doing it sooner.

[Fiddle-Faddle]

I'm just wondering if you've had your thyroid checked, and also if your doctor is "up" on the latest levels deemed to be optimal?

I had heavy, extremely painful periods last year. The OBGYN did NOT think to check my thyroid levels, even though I'd been treated for Hashimoto's for years. Later, I had surgery for something else, and the surgeon checked the levels and missed that they were low, becuase he went by the "old" levels that he'd been taught in medical school.

My endocrinologist caught it at my yearly check up.

And I had all the common symptoms of low thyroid, but because it affects brain function as well, I didn't realize I was having typical symptoms. (And believe me, I could write a book on thyroid symptoms, I know them intimately That's how bad my brain function was!)

My endocrinologist upped my dosage, all my symptoms disappeared, and my periods went back to normal. I do have one fibroid (which was causing the pain), which the OBGYN said was going to get worse, but there's been much, much less pain since the thyroid adjustment.

You sound like you are extremely thorough in your own research, so you're probably on top of this already, but I thought I'd put it out there just in case. You know how autoimmune thyroid disorders go hand in hand with celiac...and low thyroid can cause depression symptoms, too.

[lynnelise]

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.

Going to the dermatologist today for the shingles.

A co-worker had an ablasion in September and will be having a hysterectomy this Friday. The bleeding has already started again!

[Fiddle-Faddle]

There are support forums about the question of ablation vs. hysterectomy; here is just one: Open Original Shared Link

[Skylark]

A co-worker had an ablasion in September and will be having a hysterectomy this Friday. The bleeding has already started again!

Poor thing. I can see where ablation wouldn't work, but doctors can remove the uterus and spare ovaries. That's what Mom wishes she had done.

[Skylark]

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

I'm glad to hear it. I hope with the whole foods focus you will feel better in general about what you're eating. I'd recommend reading Sally Fallon's Nourishing Traditions if you're going to focus whole foods. It's a real eye-opener about the American diet, and it tells you how to prepare whole foods in traditional, nourishing ways.

Good luck with the shingles. My dad and neighbor both got great relief from capsaicin cream.

[Gemini]

Oh dear...it does sound like shingles. My Celiac daughter got shingles this summer (she was 12) She was first diagnosed with impetigo as it was on her face. But it didnt heal on the antibiotics. after about 10 days she woke up with excruciating pain in her ear. She ended up being hospitalized for 3 days as it took them awhile to make the shingles diagnosis. None of them had ever heard of a KID getting shingles. But then, none of them knew a THING about celiac. Oh, and we did finally connect it to her eating gluten. She snuck a milano cookie and puked for two days. (First and last time she cheated!) The shingles followed about a week later. Anyway, she lost the hearing in one ear and had partial loss in the other. She had to get hearing aids. Dont mess around with shingles! Your immune system is telling you something...pay attention!

I agree...you don't need rocket science to diagnose shingles. It's the only rash that will appear on one side only of the body...it follows the nerve pathway. No biopsies needed for this and I have never heard of doing one to diagnose it. The anti-virals work wonders at knocking down the severity of the outbreak but if you don't take them within 72 hours of the first eruption, their effectiveness is diminished. The rash itself is not painful but the nerve inflammation behind it is excruciating. Shingles can occur if you are run down or have liver issues.

[ravenwoodglass]

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

I am relieved to hear that you are going to choose to go with a whole foods (gluten free) diet. Perhaps thinking of it as simply whole food and nonprocessed it will be easier for you to do. You are thus making the choice to treat your body as well as you can rather than 'treating a disease'.

I have been following the discussion but what you are going through with your liver just hits so close to home for me that I was having a hard time being able to write a post. Quite a few were deleted but you have gotten some good words of advice, information and support from a lot of people.

I am glad you are making the choice to give yourself the best chance you can have at a long and healthier life. I hope things go well with your procedure and that you are feeling better about everything soon.

[IrishHeart]

I agree...you don't need rocket science to diagnose shingles. It's the only rash that will appear on one side only of the body...it follows the nerve pathway. No biopsies needed for this and I have never heard of doing one to diagnose it. The anti-virals work wonders at knocking down the severity of the outbreak but if you don't take them within 72 hours of the first eruption, their effectiveness is diminished. The rash itself is not painful but the nerve inflammation behind it is excruciating. Shingles can occur if you are run down or have liver issues.

The doc took a "scraping" from hub's rash--like a swab--- to be sent to the lab when he suspected shingles, but he also gave him the anti-virals right there in the office. And yes, the shingles were very painful.

I used the word biopsy in my previous post with a ?? because I wanted to be sure I gave the right info. Maybe not all docs do this?? Not sure.

Fortunately, the treatment was effective, but he also does not have the compromised immune system that we have.

The fact that Suz resumed her gluten-free diet and they appeared sure sounds like it could be gluten-related, but it does not of course, rule out any number of other reasons for the rash. She has a lot going on that is stressing her out, that's for sure.

Maybe the dermatologist has more answers for her.

[zus888]

Yes, the dermatologist said that he has no doubt whatsoever that it is NOT DH, but shingles. And, he would NOT give me medical clearance for any of my procedures. I'm to go back in 2 weeks to hopefully get clearance. New dates for my biopsy and surgery, which doesn't make me happy.

[Gemini]

The doc took a "scraping" from hub's rash to be sent to the lab when he suspected shingles, but he also gave him the anti-virals right there in the office. And yes, the shingles were very painful.

I used the word biopsy in my previous post with a ?? because I wanted to be sure I gave the right info. Maybe not all docs do this?? Not sure.

Fortunately, the treatment was effective, but he also does not have the compromised immune system that we have.

The fact that Suz resumed her gluten-free diet and they appeared sure sounds like it could be gluten-related, but it does not of course, rule out any number of other reasons for the rash. She has a lot going on that is stressing her out, that's for sure.

Maybe the dermatologist has more answers for her.

Hey Irish!

I had no idea there was a swab test for shingles! Learn something new everyday! When I had my bout of the damn things back in 2009, I guess it was pretty obvious what I had because the doc immediately said it was shingles, which I knew anyway, and wrote me a script for Acyclovir. It worked very well at knocking down the attack. Maybe when they aren't completely sure, they do the testing?

Shingles does appear when you are run down, for the most part. It can be caused by low thyroid, which can make you anemic, a liver problem or a number of other issues that will cause you to become run down. I didn't realize I was that run down myself but I was. If you are eating gluten when you aren't supposed to be, that will cause your immune system to go into a tailspin and the inflammation can wreak havoc. That is another reason for a shingles outbreak. Shingles should not occur if you are following a strict gluten-free diet, unless you have ongoing medical problems. Mine was a thyroid issue, which led to anemia and BAM!

I was still in the recovery phase of things so my body was reminding me to still take it a bit slow....which I never do.

I am not a fan of dermatologists. I am sure there are good ones but I have seen them make so many mistakes with people, including me. Another set of doctors I don't trust but that's my issue. ER doctors do a better job of diagnosing shingles because they see more of it. People go to the ER when they pop because.....you know....it's damn painful! I am preaching to the choir....you know your stuff! Thanks for pointing out the testing.....good to know but I am really hoping it never happens again.

[pricklypear1971]

Yes, the dermatologist said that he has no doubt whatsoever that it is NOT DH, but shingles. And, he would NOT give me medical clearance for any of my procedures. I'm to go back in 2 weeks to hopefully get clearance. New dates for my biopsy and surgery, which doesn't make me happy.

So did he do a scraping?