Hla-dq 1,1 (subtype 6,6)

[nora-n]

One has the right to a second opinion here, and I am thinking of going to the same hospital my daughter went to. She was diagnosed based on positive response to eating gluten-free, negative tests (after she had been off gluten for many months and then back on gluten for the tests, it takes more than a few weeks back on gluten I guess. And it usually takes more time with the other genes, or never, but the results of consuming gluten are dramatic and one can have the cancer in the intestines too when one just has DH, for example.

There are at least two camps in the GI world, those that only are interested in the villi damage thing, and those that are interested in the damage gluten does to the whole body....I met the villi only gang, and a doctor who is interested in psychiatry (when tests are negative it must be in the head)

It is not so easy just to go to another doctor here. And one has to find a better one, and who has an opening in the list or one cannot pick him.

nora

[linda7276]

One would think that your daughter's diagnosis, coupled with your symptoms, would lead to the doctor question where she got the gene...well hang in there Nora, I feel for you...

[fedora]

nora,

Hey. I am so sorry. How frustrating. As a kid I was dismissed by drs, even though I threw up, had bile diahrea, terrible acid reflux, and joint pain. They told my mom I had an ulcer and growing pains. I was NEVER tested for anything, even after I threw up blood once. At 15 I was much better(never got treated for anything though) but still could not play sports cause my knees would start hurting again. I saw a dr and told him I had arthritis. He totally dismissed me. He did have xrays done. they showed a spot on my leg. I had a bone scan and had a terrible experince with the needle. bad. I was so scared. After it came back fine the same doctor said I had arthritis. ugh. He wanted to run blood tests. I was tramatized by then and said no. I knew I wasn't dying of bone cancer at least. The said thing is that the whole experience I had with drs all those years left me so scarred and untrustworthy of them. I know I am just as smart as they are, just have not gone to medical school. ugh. Now I have a high deductable insurance so I pay for everything basically, so I pick and choose when I go. It is usually disappointing.

As a teenager, I still had some arthritis when it was about to rain or if I started playing sports. I stopped trying with the sports. so things were better. I was anemic, was tired, and very very slow. I did not feel well often and would sometimes still have digestive issues, though nothing like before.

At 19 I started to itch all over from the inside out. It was horrible and I thought I would go crazy. I saw a chiropractor who muscle tested me. I came out sensitive to wheat. I gave it up and was itch free within the week. I stayed that way for a few months. After that I was way more careful about how much wheat I had.

At 25 I got a rash on my finger that eventually covered most of both hands on the palms and fingers. It was devastating. I knew I should give up wheat again. Eventually I did. At 27 I started having anxiety attacks, constipation IBS attacks, feeling like I was losing my mind and unable to do anything. I saw my dr. We ran tests. Everything was perfect. By the time I saw him again I was doing better. I had given up wheat finally and was doing pretty good about not eating it. I told my dr about my rash from wheat. He mentioned gluten and celiac. I had never heard of it before. He said I would have chronic diahrea though and I dismissed it saying I was fine with oatmeal and barley. Truthfully I was aghast!! I was horrified at giving up more, wheat was so hard. I felt like I was having horrible hormone problems. I had started taking a hormone balancing herbel mix. I continued with denial till last summer when my good friend and neighber got diagnosed with celiac. He told me you did not have to have diahrea, you could have constipation or alternating symptoms. As soon as he told me I knew I needed to finally check out gluten for good. I already ate some gluten free food, like my brownies. I wish I had come home from the dr 5 years ago and googled celiac. I didn't. I even bought a gluten free cookbook and didn't even read the info in it thinking it did not apply to me. so very stupid of me. It even says in there( I eventually read it this year) that celiacs can have constipation or alternating attacks. ugh.

Looking back, I had symptoms since 9. I am now about to be 33 in a week!!!

what was your first link to investigating gluten?

[Rachel--24]

I always feel there is nothing I can say when a woman reveals she's had to put hopes of pregnancy on hold. On the other hand, I think it's worse to 'politely ignore' the topic. I feel for you on this one. My husband left me with a 3 yr old and a newborn when my body broke down from the stress. It was too hard for him. I believe you will get your health under control and that will invite more positive 'happenings', including children. You will be Monumentaly prepared to raise them with good health.

Thanks Tracy

I'm honestly ok with having had to put pregnancy on hold. Obviously, its not what I'd planned....BUT....I also feel that if I hadnt been hit with this PRIOR to becoming pregnant there may have been problems for my child.

Without a doubt there were things going on long before I got the symptoms. I feel that this gives me the opportunity to improve my health before attempting pregnancy.

My own Dr.'s told me that if I had been hit with this same level of toxicity at age 1 (rather than age 31).....there is no doubt that I would have been dealing with Autism. Knowing what I know now....I think the chances of my children having health problems (as a result of my own increasing toxicity) would have been very high.

So now I have the opportunity to possibly change that outcome. I've discussed pregnancy with my doctors.....but if I were to attempt that while my body is still dealing with all of this....I would be setting up my child for the same types of problems I'm dealing with. They see it everyday in their practice....they are treating the mothers AND the children....and very often they are all dealing with the same underlying issues.

My symptoms started appearing at around the exact time that I was trying to become pregnant. Everything happens for a reason and I feel that if I *had* become pregnant my child would have been exposed to alot of things that may have caused illness....or even autism.

So I'm hoping to clear alot of that up so that if there is a child in my future he/she will not be faced with all of this at such a young age. Also, I'm very glad that through all of this I became aware of the risks with vaccinations.....so if that ever comes up...I will be much more informed and cautious when making those decisions.

Stress really is a 'killer'. It just destroys your body, inviting toxic invasion. You are right in saying our society bombards it's bodies with toxic chemicals. I had no idea until now. At my worst, I was drinking a 2L bottle of Diet Pepsi each day... I did that for years.

I agree.....stress is a major factor in almost all cases of chronic illness. It just puts such a strain on the immune system and yes....as you said....it invites toxic invasion. We accumulate toxins during stressful times....and with the accumulation of toxins we also invite infections.

I'm in touch with my N.D. re: looking into mercury tox and Lyme Dz. I'll need to find someone here in Sarasota area who is highly recommended... I do have a lead from someone on this board.

I'm glad you got a lead....I hope everything works out.

[Rachel--24]

I believe everything happens for a reason, and the information you've collected has been for a very good reason. It will be a big undertaking and that's why I think you should start now...

Thats funny!

Honestly, I think I still have alot to learn. I think before I can compile and organize all of this info....I will need more pieces of the puzzle. After all.....every good book needs a happy ending.

It would definately be a HUGE undertaking.....and right now I dont have the time to focus on that because I'm still working on my health. But someday...

I feel the same way though....it was all for a very good reason. Everyone has told me that...but its something that I've "felt" deep down since the beginning. I've mentioned it many times but in the beginning it was like "someone" was guiding me toward all of these things....and at the time I wasnt familiar with any of it.

Even though I'm able to retain all of this and understand it well enough to put it into words....when it comes to the basic small things I'm still a little "challenged".

Today I was trying to fill out my deposit slip at the bank while talking on the phone at the same time. Its not easy for me to do that! I was telling my friend that alot of people feel I should become a doctor after all of this. She was like "Do they know you can barely fill out a deposit slip??"

I'm only completely clear headed when I'm extremely strict with my diet.....but I like to induldge now and then ...so I do have some days where I'm just totally unfocused and a bit "scattered".

Out of bad comes good. Some of our greatest lessons come from this kind of thing. Some people withdraw, and follow along the already traveled path, and just take their medicine everyday, no rocking the boat, just going along...and the doctors probably love that too, but you want to know why...how can it be fixed, and all of this research you're doing is a wealth of information.

This is so true. I dont know what makes some of us withdraw and accept whatever comes our way.....while others are more willing to rock the boat and push hard for answers.

I honestly wouldnt have imagined that I'd have this kind of determination. I dont know where it came from but I'm glad it was there....somewhere inside of me. I guess it was saved up for all of this.

Who knows where the road will end up...life has a way of taking us to places that aren't even on the map...to places we never thought we'd go....and I believe you're on your way to one of them.

I do feel like the road I'm traveling is going to take me somewhere special. I dont know where I'm headed yet.....but I'm definetely looking forward to getting there.

I used to feel a little "unsettled" about my life.....like I was just existing but not really serving any purpose. I was happy....but at the same time I felt like I wasn't doing anything productive. If I hadnt gotten sick....nothing would have changed. I finally feel some sense of accomplishment.....even if my health hasnt yet been fully restored...I do feel that I've worked hard and that I'm heading in the right direction.

Thats why I say that even though alot was taken away from me due to this illness.....I also gained much more than I lost. Everything I've gained has "true" meaning....the things lost were superficial.

And I'll be able to say I knew her when.....

....when she was only eating beef and peas.

[nora-n]

My daughter was sick with celiac and anemia 8not diagnosed....) since about two or three and I thought she needed to have floating stools adn diarrhea for her to be ceiliac. She did have floating stools for a while badk then but it went away but I mentioned it to the nurse at the health station and she asked what I did about itnd I did answer , I only fed her rice instead of any wheat, or barley. But she did not have those floating stools afterwards (but she might have had them after that again when I did not check the stools because she was going to toilet herself. I have other children too so one does not notice evything.

About what started my interest in celiac? well, I did have some knowledge of celiac and that it meant one must have diarrhea and floating stools, both of them were neccessary as far as I had learnt

Now I have a younger sister who is a diagnosed schizophrenic and I had picked up the news about eh research of Reichelt and schizophrenia, and as soon a s I got internet, I started to look for his research. I found the colleccted net articles of kalle reichelt after a while, and some celiac listservs and some newsgroups. This was in 2000.

Later I learnt that the constant diarrhea and floating stools are not neccessary. But I had read along about celiac since then.

Then later I suggested for my daughter that she try gluten-free when she had her second round of graves, to avoid RAI. Now she was motivated, but some years earlier she had been on an elimination diet to find out what she did not tolerate, and she basically gave up after adding cheese since she slpet three days after the cheese and she did not want to give up cheese......so much in denial just like you.

I have another sister with very low ferritin for years and her doctors never even suggested iron shots or iv iron. Tablets do not help much. She has other problems too, like fibromyalgia and a highish TSH but still often within range.

I used to read Adelle Davis' books and fed the children with whole wheat home-baked bread.....and lots of milk. So ironic. And, we live in a country that practically demands that one eats a lot of bread since schools have no food served and all kids have to bring bread sandwiches, and enough of them. several slices a day. Breakfast is usually several slices too, and evening meal too....even the swedes eat less bread than us. I mean, even non-DQ2 or 8 would get celiac here, look at japan where they are DQ9 because of the sheer number of DQ9 there, it has to do with how much glutenoneis exposed to, plus how many of certain genes are around in a country (but still Dq2 and 8 of course are most prone)

nora

[Siga]

Since I am HLA-DQ 1,1 (subtype 6,6) I thought I will post some of my symptoms.

Started to have gray hair in high school. (just as my dad).

Short stature and petit (just as my mom and my daughter).

Restless leg syndome.

Consistently low Red Blood Cell Count and high MCV most of my life.

B12 rather low when I am not getting B12 shots, but does not seem to be out of range (361 pg/mL, when normal is considered 211-911). Nonetheless B12 helps enormously, just not long enough. Right now I am receiving injections every other week, but they seem to last for only 5-7 days (sometimes longer).

Thyroid antibodies present for at least last 10 years and seem to be getting worse:

Thyroglobulin AB: 4.2 U/mL in 1997, 56 IU/mL in 2006, 118 IU/mL in 2008. But it