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Just A Hello
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Hi ; )

I just joined.

I'm frustrated and hurting.

I'm surrounded by intelligent, compassionate people who are struggling to understand.

I do not want to talk about such private issues with everyone.

I've been gluten free for almost 5 months. I was diagnosed 4 months ago and am on my third month of dapsone.

I started taking neurontin a year ago, when the rash began. Now I'm taking both. I'm doped up and in pain all the time. Very restricted diet. I want this to end. I had a life.

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Oh Hon, you still have a life. You are just going through one of the rough patches in that life right now. I'm not an expert on DH, but from what I've read here it can take a couple of years of being gluten-free for all of the antibidies to leave your system. And going low iodine seems to help many if not most. Read as much as you can in the DH section, check out the sticky at the top of the forum for newbies, and ask as many questions as you can think of. There are a lot of very knowledgeable people here who can help you.

In the meantime, feel free to rant or whine or whatever you need to do. I think every one of us here has had at least one whiney thread. I know I made several, and every one was met with compassion and understanding, AND gread advice.

It's going to take time, but it WILL get better. I promise. (((((HUGS)))))

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Hey!

I can't tell you what a relief it is to find you guyses.

Reading, reading all the same symptoms and solutions I have and have tried.

I have faith.

Just

Such

A

Relief

To

Find

People

Like

Me.

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Hi Lolli-

So sorry you are having such a rough time. Just wanted to second what bartfull posted. We have all posted our frustrations a time or two or maybe ten! Feel free to vent - there is always someone popping on that will try to help alleviate frustration or answer questions.

You will improve if you keep at it - try to notice and celebrate any small improvements along the way.

This will get better and you will gain health - unfortunately it can take time.

Hang in there!

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Hi Lolli! And welcome to the board!smile.gif

I have dh too. Feel free to post wherever you like but there is a dh forum too --- it is here:

http://www.celiac.com/gluten-free/forum/26-dermatitis-herpetiformis/

it's probably better to post dh questions there.

Otherwise for all other celiac issues then pick the appropriate forum & go for it.

Geez, I think I've posted 2 whiney threads. We get it. Been there, done that.

Tell us Lolli what is going on with you? Where is your pain? How is your dh? What are you eating? Talk to us.

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Firstly, thank you for the warm welcome.

I can't even begin to describe the horror of this last year and a half.

Secondly, I am a very positive, loving, rightly ambitious person. But, this thing is bigger than me. I can't tell what, of the many things going on, is affecting me most right now.

I have always been skinny. I was raised on the Atkins diet, because my father was a heart surgeon. I could eat whatever I wanted, but always made healthy choices from my upbringing.

Because of the unbelievable things that have gone on in the last year and a half, in my personal life, I have allowed myself to grieve and dip into self pity. I normally don't indulge in self pity.

Dec. 2010 my lover emailed me that he had begun an affair with a married woman. She demanded a full std test, so that she wouldnt bring anything home to her husband. He tested positive for 3 things. Oh and that he didn't want to see me anymore. I think I went into shock. I had to see them at church. I stopped going. I coped. I had so much on my plate. It was winter and that has always been hard on me because I had no fat. I was enrolled in classical ballet, to maintain strength and manage my scoliosis. I added 1,000 calories a day, it was a hard winter that year, mostly bread. At the end of the semester, a rash appeared, just above my tail bone. I thought it was heat rash from the leotard and tights and the growing heat in the studio. It got worse.

I thought I had caught something. I did. But, only one.

I began suppressive therapy and excluding stressful people, places. I took algebra over the summer and made A's even doped up like that. My daughter was in a 3 wheeler accident that broke her nose and we basically had a burn victim on our hands. I stepped back from any kind of public life, then.

By fall, no improvement. I stopped suppressive therapy because I knew I couldn't function with a full course load and live in general, like that. By now, 10 of my friends had died from overdoses, drinking, age. I am a recovered alcoholic. I removed myself from AA. The grief inside my home group was tearing it apart. I still work with my sponsors and sponsees. Fast forward to spring this year.

I was on the back porch, barely able to do what I needed to do. Trying to cut myself some slack after so much. By then 20+ friends gone.

I sat. I thought,"where is the girl (I'm 46) that used to be at work at 7:30?! Lifting 155 lbs of hurricane tarps?

This is not normal for me, for anyone.

My mother suggested I look into celiac.

And there it was. There it ALL was. I started gluten free.

It had previously taken 5 years to gain five pounds. I thought I was just high metabolism. Doing too much. Dancing to much. Gluten free, I gained 20 pounds in less than three months. I brought everything to my doctor. Originally, I wasn't going to take dapsone, but after no relief from gluten free, I was willing to try anything. She agreed.

In April I was SO hungry. Eating twigs and berries. I went fully gluten free. Raw. Hard. I read, I learned, I applied, I screwed up. I guess I'm just chock full of antibodies. I've read that production can go up after gluten free, for some reason. And about cc, iodine, and foods whose molecules are shaped similar to gluten and the villi freaks out.

I work, volunteer, and study emergency management and business administration.

I'm not giving up. There is good in the world and good to do.

;D

<3

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Oh and

I went down to rice, cucumber, and pear. This week I added banana.

I had the opportunity to deploy nationally, this summer, but I declined due to obvious health reasons.

I bought and packed gluten free food, just in case. It's been a very busy year in my field. I switched my prescriptions to Walgreens and keep my eye on my blood test dates.

As it is now, it would be very difficult to go into a downed infrastructure and remain well.

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And maybe, just maybe, my story will help somebody else.

<3

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And maybe, just maybe, my story will help somebody else.

<3

It does! I'm new here but just wanted to say Lolli, you're also a very good writer! ;)

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rolleyes.gifIt was same in my case little plus minus , being gluten freefor 6 months it is much better , life is back , I can see/feel the colors inlife again . We should feel lucky we know the problem , my Grand father died ofit without knowing what was wrong with him .

This will get better and you will gain health- unfortunately it can take time. They say "Knowing is not enough; we mustapply. Willing is not enough; we must do".

Good Luck .

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You all have been just great!

I read a bunch of stuff and applied it.

I had my first itchless night, in six years last week.

My food list has gotten tiny, tiny, but the symptoms are subsiding.

I can hardly believe it.

I haven't been glutened in about 4 weeks.

My bloating has diminished and I no longer feel like I'm being disemboweled.

Now, I just need to keep this up and slowly test individual foods.

Not really ready to test anything. Ouch.

I'm gonna keep coming back to learn!

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Atta girl Lolli! Just take it nice & easy. Feels great not to itch doesn't it? So keep up the good work & just enjoy feeling better even if your food list is small right now. It will grow.smile.gif

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Hi Lolli. I am going to keep coming back to learn all this awesome info myself. Keep your chin up...I believe there is help for us ALL!

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Hi ; )

I just joined.

I'm frustrated and hurting.

I'm surrounded by intelligent, compassionate people who are struggling to understand.

I do not want to talk about such private issues with everyone.

I've been gluten free for almost 5 months. I was diagnosed 4 months ago and am on my third month of dapsone.

I started taking neurontin a year ago, when the rash began. Now I'm taking both. I'm doped up and in pain all the time. Very restricted diet. I want this to end. I had a life.

Hi, I'm kind of new here but I want to welcome you too and tell you that I totally understand your frustration, this is a hard thing to accept!

I'd joined here several years ago but at the time wasn't sure I "belonged" here as I've never been officially diagnosed; also the forum didn't seem too active so I eventually forgot to come back. Through those years I kept eating wheat/gluten periodically. When things caught up with me in some way, I'd stop for a few months but eventually fell into temptation again. It was also amazing how I'd "forget" things I'd read before and how I could not see the connection between my worsening health and the pattern I'd created.

It took a rough wake-up call last Spring for me to come to terms with my "gluten sensitivity" very possible celiac. It came in the form of a thyroiditis attack (2nd since last year...) accompanied by the panic attacks from hell, intermittent diarrhea, queasiness and pain in the liver area, nearly paralizing fatigue and depression all of which interfered with my sleep. The puzzling thing was that all that happened about 2 months after I'd cleaned up my diet again (but I learned here that some people go through a period of "detox"). Also, during my so-called gluten-free period I'd cheated a little a couple of times by having cheesecake with cookie crust, at the time I thought it was more of a "wheat allergy" so I'd pop an antihistamine and avoid the worsening of my chronic nasal congestion (my only most obvious and immediate symptom) and thought that was the worst of it.

But I forgot about my thyroid... I'd read many years ago that antibodies from gluten would attack it, so I've had a few thyroiditis attacks, during those my throat area gets swollen so I can't lie on my side when I sleep or I choke, and the symptoms that go with it are like being hyperthyroid, not fun at all. And I also "forgot" that last year eating wheat had begun to give me loose bowel movements (and I was always constipated...) and awful abdominal cramps.

But I also read that such antibodies can be lowered by taking vit. B12 and selenium, so I made a point to try to take those supplements as regularly as I could remember, which sometimes I just didn't, but on the whole I think that kept me from things getting much worse. So perhaps you could give that a try. I'll try to find the article I read about it (if it's still available online) so I can give you the link, who knows, perhaps that might help shorten/speed up your recovery period. ;)

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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