I Had Hoped To Never Return To This Place

[Fiddle-Faddle]

You mention that you have children. I was wondering how old they are? And if they might be at risk of having either celiac or gluten intolerance themselves? The predisposition IS hereditary; while your celiac was apparently triggered in adulthood, theirs might be triggered earlier. Vaccines are a common trigger of autoimmune disorders. Adults are receiving far more vaccines than ever before, and the number of required pediatric vaccines has tripled since most of us were children. So if they have frequent tummy aches, migraines, and/or rashes,

I also wonder if you've tried to make gluten-free versions of the foods you love.

Dinner rolls, for example. The pre-made rolls sold in the grocery stores taste awful--like styrofoam.

But homemade ones taste like...homemade rolls. And they're not hard to make at all. I will be happy to send you reams of easy-to-make, good-tasting recipes for anything you want.

I cried for 2 days when I was diagnosed. Then I started hunting for recipes.

I told DH and our 3 children that from now on, breakfasts and dinners would be 100% gluten-free. I couldn't deal with a "mixed" kitchen. They could have their own bread, but everything else--from pancakes to dinner main courses to soups to desserts --was going to be gluten-free.

Not only did they not complain, but they scarfed down everything. Since I had not previously cooked much from scratch, apparently, everything tasted BETTER now.

I was VERY surprised to notice that the kids' occasional tummyaches and rashes miraculously improved. Turns out, they all have either celiac or gluten intolerance as well. So they are now 100% gluten-free, and rashes and tummyaches are totally gone.

When the kids go to a party where pizza and cake is served, I make gluten-free pizzas (very easy) and a 3-minute, microwave mug cake with frosting to send with them. They have never complained, and their friends' parents report that they have always turned down gluten, and asked to see labels of things like chips.

I told them not to feel bad if they saw something that looked amazing that they couldn't have, because whatever it was, I would promise to make it for them, gluten-free, within a week.

We tested the middle kid (the one who had the most severe rash) in particular by going back and forth with the gluten-free diet. The first time we put him back on gluten, he got diarrhea and the rash came back, but we thought maybe it was coincidence. So we tried again a few weeks later. Same thing, but more severe. He sat on the toilet and sobbed that he was NEVER going to eat gluten again. And he hasn't.

He was 7 years old. It's been 6 years, and he hasn't cheated once.

So, I have one last question for you relating to your kids, and this is the most important one. I'm sure that you are aware gluten is a major factor in many autoimmune disorders, and may likely be involved with your liver disorder. In fact, a quick search on PubMed reveals SEVERAL studies linking your liver disease to celiac.

Open Original Shared Link

"Celiac disease in patients with severe liver disease: gluten-free diet may reverse hepatic failure."

Open Original Shared Link

"The liver damage in celiac disease ranges from mild hepatic abnormalities to severe liver disease and may be seen in 15-55% of patients. The mechanisms underlying liver abnormalities in celiac disease are not defined clearly. However, consumption of a GFD is an effective treatment for most patients with celiac disease and liver disorders."

YOUR LIVER DISEASE IS NOT A SEPARATE ISSUE FROM YOUR CELIAC.

How much do you love your kids? Do you love the convenience of gluten-free food more than the idea of being here for your children in 10-12 years?

[IrishHeart]

"You may have to fight a battle more than once to win it."

Margaret Thatcher

zus,

You're in the thick of battle now, kiddo.

My hubby put this quote by Thatcher up on the fridge back in 2008 as we began our long search for an answer to what had gone so terribly wrong in my body.

This is your motto now.

DO. NOT. QUIT.

JUST take one step at a time. One day at a time. Do something to relax your body and brain. Tarnalberry offered a great suggestion! I actually do a few yoga positions myself to stretch, relax and strengthen.

It gives me a sense of freedom, peace and some CONTROL over my body.

And keep talking to us!!--just know that sometimes, you may get some "tough love" answers in response.

This PLACE --where you had hoped never to return?---is a place of warriors who will help carry you through.

Best wishes, IH

[lynnelise]

Everyone has given you really good advice. I tend to agree that subjecting yourself to gluten will increase inflammation and could worsen your liver condition, so that is something to think about for the sake of yourself and your family. So while I'm in favor of being 100% gluten free maybe instead of always eating whatever you want you could pick certain occassions (Christmas, B-day, ect) on which to eat gluten being vigilant the rest of the time? Again I personally do not think this is a good idea but I have heard from a lot of celiacs and GI people that they do this and being strict with the diet 95% of the time has to be somewhat better than eating gluten daily! Maybe it could even come to the point that these occassions come up and you decide you don't want to eat something glutenous. Maybe you'll feel better just knowing that you have allowed the option.

I do understand the frustration of giving up so much for very little visible benefit. I have chronic mono so basically I feel like I'm coming down with the flu every single day. I hear many stories of people who have great energy and feel years younger on the diet. Personally I have seen some relief of joint aches and a resolving of my stomach issues but my fatigue and general malaise are unimproved. Most days my energy and well feelings are much less my parent's who are in their 70s!!! You just have to make peace with yourself and your body. Easier said than done I know. It's a long process I have been dealing with for three years now. I used to go to the gym daily, spinning, kickboxing, weights. Now I am restricted to gentle walks and meditative yoga. Anything more and I have a major flare and will be basically stuck in bed for 2 weeks. It's hard to accept that I have limitations. It made me angry. Then I think of how much worse things could be and slowly I've come around to being grateful for what I can do!

[zus888]

.....aaaaaand now, the doc says those painful "bites" along my bra line are not bites at all, but SHINGLES. WTF? I'm more stressed about all of this than I realized. It upsets me more that I'll probably have to put off the biopsy and also possibly the hysterectomy that I had scheduled for this month. Freakin' A.

[pricklypear1971]

.....aaaaaand now, the doc says those painful "bites" along my bra line are not bites at all, but SHINGLES. WTF? I'm more stressed about all of this than I realized. It upsets me more that I'll probably have to put off the biopsy and also possibly the hysterectomy that I had scheduled for this month. Freakin' A.

How does the doc know they are shingles?

Guess what my DH looked like in the beginning???

Yep, shingles.

Did he test you for shingles???

Oh, and BTW do you know where MY DH OCCURS???

Around my bra line/under arms.

[IrishHeart]

I was just going to say EXACTLY what PP said above---

I would be skeptical those are shingles, I bet that's your "prize" for resuming GLUTEN.

If he did not test you for shingles, which is done I believe, by a culture from a biopsy?? or checking for elevated herpes zoster antibodies, (which were elevated in me while on gluten, BTW) then, I fear he is just guessing.

I had sores on my scalp and forehead that were red and blistery and popped, but I never thought they were classic DH. I had/have nerve pain in my face and associate it with celiac. And my skin BURNS.

The sores are gone and ONLY recur with a CC glutening.

but if it is shingles, You need to be treated ASAP!!!

[zus888]

Does DH itch?

[psawyer]

Does DH itch?

I didn't get DH, but I understand that itching is typical.

[pricklypear1971]

Does DH itch?

It's itchy and painful, especially in the evenings (for most).

It fills with liquid, pops, refills (or more blisters form and they pop). In the beginning, I couldn't really see the blisters or notice the weeping. The blisters were minuscule. But they got bigger. Way bigger over the years.

It can also change/evolve over time. Spread, blisters become larger, all-over feeling if illness, etc.

Read the DH section.

[zus888]

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.

[Kimbalou]

Hi. First of all, I want to say that I think it's good that you told us how you are feeling. In my opinion, you really need to get some psychological help. It isn't normal for you to feel suicidal. Suicide is a permanent end! I am not sure about the details of your liver diagnosis, but I know about Celiac because I have it. I understand how you feel. It must have been hard because you said you didn't really have any symptoms of Celiac while eating gluten. I have BAD diarrhea, foggy head, lethargy and depression/anxiety...so when I eat gluten-free I feel BETTER. So, that's why the diet is worth it to me. I look at it as a way to feel better. I've been on the diet a little over a year and it works for me. I do get angry at ignorant people who don't understand the diet or Celiac, but I have never felt suicidal over it. That is why I am concerned for you. PLEASE talk to someone. There are Celiac support groups out there too.

Hugs to you,

Kim

[pricklypear1971]

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.

Well, given your autoimmune history you're a likely candidate for either one. Did they develop while you were gluten-free or pop up after?

I'd ask the doctor to take a scraping. Let's put it this way, if you want another confirmation of Celiac this may be your chance. If the test is positive for shingles you'll know it's shingles. If its negative, then ask for a DH biopsy. If its positive then you have your Celiac confirmation (if it's negative it doesn't mean you aren't, though).

Some of my spots really hurt after they've been there a while, deep down and achey; however there's usually itching at some point. I have spots that never blister, just get red and those don't itch. Old spots will form a long-living scab that rarely itches. New spots are fierce.

[Fiddle-Faddle]

It actually doesn't make a whole lot of difference if it's shingles or DH.

Either way, gluten is setting off an autoimmune reaction.

If it really is shingles, antivirals will help.

Shingles tend to be terribly and unrelentingly painful, with some itch as well; DH tends to be unbearably and unrelentingly itchy, with just a bit of pain. I've had them both, and the blisters look practically identical.

Shingles follow one nerve pathway, exactly. DH is usually perfectly symmetrical.

Taking a supplement of L-Lysine will help inactivate the herpes virus (shingles is herpes zoster, the same virus as chicken pox). That's actually how veterinarians treat animals with herpes infections.

HOWEVER, if you are eating gluten, you won't absorb the L-Lysine, antivirals or pretty much any other medication they give you. You are also not absorbing nutrients from your food, or your multivitamins (if you take any).

I don't mean to sound harsh. I have been where you are (as have most of us here), and I know how very, very tough it is for you right now, both physically and emotionally.

But you seem to be out of choices. L-lysine won't help DH. The only thing that cures DH is to go off gluten. The only way you can absorb meds for shingles is to go off gluten.

WE CAN HELP YOU THROUGH THIS. YOU ARE NOT ALONE.

If there's some kind of food you can't bear to give up--tell us what it is, and you'll be bombarded by different recipes for it. There are gluten-free flour mixes out there that can be subbed cup-for-cup for regular flour in whatever recipe you want--with very, very little difference in flavor or texture.

The only thing you will be giving up (besides for your illness) is a little convenience--and gluten-free is becoming more and more convenient every day.

Can you look your children in the eye, and tell them that the convenience of gluten foods is more important to you than being alive for them 10 years from now? For most of us, the mortality rate associated with celiac is this vague chance that is somewhat higher than the mortality rate for "normal" people. We have a higher chance of developing stomach cancer, lymphoma, and diseases like MS and lupus. For you, it's a heckuva lot more immediate. You have already crossed over into fatal disease territory. You have Primary Sclerosing Cholangitis, which is associated with celiac disease, and is apparently cured by a gluten-free diet. You're really going to choose gluten foods and a liver translplant over a cheap, easy lifelong cure? You're really going to put your children in the position of wondering if someone has to die to donate a liver to their mother? And to wonder if she'll then survive the surgery?

Come on.

One more point--are you aware that for susceptible individuals (like you, me, and everyone else here), GLUTEN HAS AN OPOID EFFECT ON THE BRAIN? Gluten is literally addictive.

Just so you know I'm not making this up, here:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

"The peptides from gluten and casein can react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds, called neuropeptides, have been shown to react with areas of the brain's temporal lobes that are involved in speech and auditory integration. Neuropeptides also decrease the ability to feel pain and effect cognitive function."

Can you see that the gluten you've been eating might be clouding your ability to think straight here about gluten, just the way someone on heroin cannot conceive of giving up heroin?

Hang in there, let us know how we can help you, and please keep us posted, okay? And think about what I've posted. Every time you look in your children's eyes.

[Fiddle-Faddle]

.....aaaaaand now, the doc says those painful "bites" along my bra line are not bites at all, but SHINGLES. WTF? I'm more stressed about all of this than I realized. It upsets me more that I'll probably have to put off the biopsy and also possibly the hysterectomy that I had scheduled for this month. Freakin' A.

Hysterectomy?

You might not NEED a hysterectomy if you go off gluten.

Open Original Shared Link

[notme]

suz - the fact that you are here speaks volumes. and maybe staying gluten free will clear up your liver problem - many of us have had a ton of other 'unrelated' symptoms go away by just eating the right stuff. f**k that dinner roll.....!

[Kimbalou]

Hysterectomy on top of all of this? Is that really necessary?

[love2travel]

I've been away for a few days so have joined this a bit late. It is difficult to add anything to the advice you have already been given. You and I went gluten free at nearly the same time. I, too, do not feel any different or better and in the back of my brain occasionally wonder whether my diagnosis was correct. Although I do not feel ill at all from eating gluten (I should say that in the past tense!) I fear what else could be going on inside my body and that alone keeps me from cheating. My future is too important to me to disrespect myself by doing harm to my body. Your precious kids and husband need you badly to be at your happiest and healthiest. I do empathize with your having to deal with many other health issues as well - it truly is tough and seems unfair. But it is how you react to situations and what you make of them. I am speaking from experience! Believe me, I am not belitting your health issues at all. Just pointing out the hard truth that I learned lessons from.

For the first two months after my diagnosis, I thought I was sentenced to life in prison without parole. Now, however, I feel the opposite - I was given another chance at life!

I rarely even think about celiac except when I come here and when going out which I do not do much because admittedly that can be tough. Sure, I have to think of every morsel that goes into my mouth but it is a habit and part of my daily life. There is no such thing as unsafe food in my house. Why set yourself up for temptation and fall? I also found the more I thought about my health the worse it became. The stress created more physical pain, too.

This has a hold on you and a desperate control over you. Imagine how liberating it would feel for you to control it! As everyone has heard umpteen times I have had desperate chronic pain for four years and for the first years it definitely controlled me - what I planned, what I did or did not do, and so on. Those two years are forever gone and I cannot get them back. Though I still have unrelenting pain I live my life the best that I can. The change in my attitude really made a huge difference and I grew in leaps and bounds. I am very in tune with my body and listen to what it tells me. Each day I think of at least one thing to do that I love, even if I must lie down I will read and enjoy it. If you have little goals like that they eventually grow into bigger goals and before you know it, your health is under your control in a way. It is amazing what a person can do if you truly want to do it. Each day I am thankful for another chance at making mine and others' lives better. You know what else helps? Getting the focus OFF your health and onto something else. You have a busy life, I know, but do you perhaps have time to volunteer once a week at a nursing home or shelter? I find that sort of thing really puts things into proper perspective.

Although I suffer from intense unrelenting pain I would not trade my life for anyone else's. Each day I find joy even if it fleeting at times. You can, too. There is always hope. ALWAYS.

[deltron80]

Isn't it possible that Celiac is causing your depression, anxiety, and other psychological difficulties?

They say those symptoms can take a year or two to go away after going gluten-free. It might be worth a shot to get off the prozac. You might feel better if you give it a chance...or not.

Recognize wheat for what it is...a mind-altering, genetically modified, pseudo-food that at the end of the day is basically a drug that gives calories. No wonder you're having trouble! Go read Wheat Belly if you need inspiration.

[Fiddle-Faddle]

It might be worth a shot to get off the prozac. You might feel better if you give it a chance...or not.

Prozac is VERY dangerous stuff. PLEASE don't stop taking it cold turkey! You should wean off very, very slowly, under the care of a doctor.

Open Original Shared Link

"Often there is the terrible withdrawal associated with the SSRIs. Unless patients are warned to come very slowly off these drugs by shaving minuscule amounts off their pills each day, as opposed to cutting them in half or taking a pill every other day, they can go into terrible withdrawal which is generally delayed several months. This withdrawal includes bouts of overwhelming depression, terrible insomnia and fatigue, and can include life-threatening physical effects, psychosis, or violent outbursts."

There are some support forums for people undergoing Prozac withdrawal:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

You probably don't want to read the info I found showing that the manufacturer lied about Prozac's benefits/risks before getting it approved...

[IrishHeart]

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.

And WHEN exactly did they appear, hon? After you resumed gluten??

This is why I am suspicious, that's all.

Okay, now everybody will want to weigh in on all the other issues you have raised and it will get overwhelming for you again. So, let's take one step at a time.

IMHO--. If the hysterectomy is scheduled because of something life-threatening, that's one thing.... but it is an INVASIVE surgery that will require a prolonged recovery and wreaks havoc with your hormones and because of where it is, causes pelvic floor pain. Believe me, I know.

So, what I am suggesting is you take one step at a time.... because between the gluten challenge you have yourself on, the liver disease, the depression and a surgery, too? well, honey, you need to be in good physical condition.

If it IS herpes zoster (shingles), you have a VIRUS--and your doctor should be TREATING it. Shingles is very serious. My husband had a bout with it. It is VERY painful.

WHAT did he say it was??

[zus888]

Ok. I've been off the prozac for at least a month now. It just wasn't providing any benefit and, in fact, made things worse. I feel SO MUCH better off of it.

The hysterectomy (and this will be TMI) is due to several issues: heavy bleeding to the point of ruining clothes and sheets every month; cramps; uterine, colon, AND bladder prolapse; and the possibility of something being off because of a fishy finding on pelvic ultrasound. I'm SUPPOSED to get a hysteroscopy D&C (to rule out cancer and hyperplasia via biopsy) THIS Thursday. If that is postponed, I might have to postpone the surgery because what they do is dependent on the biopsy results. So we need the results prior to surgery, which will be laproscopic barring any complications. Technically, I probably *could* put off the surgery for another year. And that *might* be a consideration if I didn't have my liver to consider. Although I am stable and have been for 4 years, this disease is unpredictable. So, there's no telling that I'll be in better shape in one year. All I have, for sure, is now. And I'm in the best shape I've ever been in my whole life. If I put it off, I'm taking a chance that my liver disease will progress to the point of being unable to undergo an elective surgery like that. The recovery period will be 3 months and then I can slowly start adding in my normal routine (which includes running). And I have hopes to run a 5K Zombie run on Sept 1st. Additionally, I'm sick of being down for a week each month in the summer and telling my kids I cannot take them to the pool for an entire week.

As far as the other stuff, the studies I read about PSC (the liver disease I have) have demonstrated that there is no effect on the disease regarding the diet. And, I have to say that none of my blood values have been affected by the diet. Well, except for the IgG gliadin. My Sedrate (chronic inflammation) is still high, as are other inflammation markers. My abdominal lymphnodes are still just as inflamed as they were pre-diet. The diet has had no effect on anything except my IgG gliadin and my villi. That is it. I have so many docs and so many tests to monitor all the crap I have. On the other hand, I am quite lucky in that over the last 4 years, I have remained stable. Although nothing has really improved, nothing has gotten worse either.

Even this rash is mild. There may be a total of 10-15 bumps that are spaced in groups of 4 or 5. The doc mainly asked about my symptoms. She does know that I'm off the diet. And, this rash started on the 29th, I believe. I went off the diet on the 23rd. I did mention to her about the DH, but she didn't think it was that, and I'm assuming that was not only due to the presentation but also due to the symptoms (pain versus itching).

Hopefully, that answers some questions.

[zus888]

Oh, and I got an antiviral (even though it is a bit late in the game to take it, my doc thought it would still be in my best interest to do it anyway) and an antibiotic (because one of the areas looks like it's getting infected).

[pricklypear1971]

I would insist on having that rash biopsied since it came after you got back on gluten.

In the beginning, my DH was not that itchy. And it made me sore. They were just weird spots under my arms. Before that they were itchy welts between my breasts and around my bra line. I have NEVER had the same opinion from two doctors who have seen them, and none of them though it was DH when LOOKING AT THEM. But they ACT like DH - come with gluten and iodine. Leave when those things go away.

If the shingles dx matters re:any of your impending procedures and treatments get them biopsied to ensure that's what it is. That's just the medically prudent decision.

[pricklypear1971]

Oh, and I got an antiviral (even though it is a bit late in the game to take it, my doc thought it would still be in my best interest to do it anyway) and an antibiotic (because one of the areas looks like it's getting infected).

I was prescribed antibiotics for my "skin infection" also....

Funny, I was allergic to the antibiotics and the "infection" went away when I reduced iodine....

[zus888]

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.