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Kit

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    fine art, guitar, indie music, literary fiction, photography, blues singer
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    St. Louis, MO

  1. I don't know what is wrong with my thyroid... My doctor is scratching his head about it , as well.. My T3 levels have dipped even lower, after taking tapazole.. My TSh is currently 0.04..

    What is wrong with me???

    I hope by now you are feeling better...Is your TSH at .04...or does it say <.04? <.04 means it is less than .04 which is the least your particular lab can detect. That means your TSH is unmeasurable. What are your lab ranges and free T3 and free T4...do you know? Do you have reverse T3 numbers?

    Hyperthyroidism is extremely dangerous. Before the introduction of anti-thyroid drugs like Tapazole (methimazole) and PPU, there was only a 50% survival rate.

    It is expected that your free T3 should fall on Tapazole...you have too much of it, which is why your metabolism is too fast and your weight is too low. Are you seeing an endocrinologist? In the case of hyperthyroidism, you don't want to monkey around with a GP, this is serious stuff.

    I have both Hashimotos and Graves' disease, high antibodies for both (TPO and TSI). After seven years on a gluten-free diet (biopsy diagnosed as of May 1, 2002) my thyroid issues haven't resolved, and I bounce back and forth between hyper and hypo. I'm going to finally have it surgically removed next month, and can't wait to be on an even keel again! I have a wonderful naturopath who will put me on Armour (have been on it when hypo) and am looking forward to getting my life back.

    Allow me to suggest another site for thyroid disease research. Mary Shomon publishes books on thyroid disease distributed in mainstream outlets (Borders, Barnes and Noble, etc.) and runs this wonderful site that can help you in educating yourself about thyroid disease: http://thyroid.about.com/

    To the person who mentioned gaining weight when hyper...happens to me too. My appetite gets hotter than my metabolism. It isn't that rare, but can make it hard to suspect hyperthyroidism and get a diagnosis. Conversely, my son, who does not show antibodies for either Hashis or Graves' has low T3, and is doing very well on cytomel. He is 19, and at six foot four, only weighs 135 lbs. This after gaining 15 pounds on Cytomel! So his hypothyroidism caused him to be too skinny due to lack of appetite. It also caused some terrible emotional issues he had to deal with for his entire childhood. He is doing much much better now, thank goodness.

    Good luck to you both, and make sure you get the proper treatment. An endocrinologist is absolutely a must for hyperthyroidism...it can kill you.

    Kit in St. Louis.


  2. I am currently living in Western Kentucky, and debating on starting a Celiac's Support Group. The local health food store carries a lot of gluten free food. I continue to give them ideas on what to stock and they always end up running out of it.

    Problem is they don't want to start anything, but they said they'd donate food and they'd help advertise. So any ideas on how I could start this? I've got no friends who have Celiac's or who would want to get involved. So I'm starting from scratch.

    Any ideas would be a big help!

    One way of getting a group going is call your community outreach people at your nearest or biggest local hospital. They'll often post support group meetings in their mail-outs and online, and may be able to get you a room in which to meet.

    Be sure to notifiy all the GIs in your area of your support group, giving them hand-outs, as needed.

    As far as support groups go...I like GIG (gluten intolerance Group) http://www.gluten.net/ - over CSA, who has been stubborn, ineffectual and inflexible concerning outreach and education.

    Good for you! and Good luck!


  3. Yes, this weird stuff with misunderstanding hunger cues is a really big one for me when my stomach is queasy or upset. At first, food helps, then I feel like crap again. I had the H. pylori test and treatment (the antibiotics are horrible), and did feel a lot better, but couldn't stand the meds to complete the 21 day trial. Most ulcers are caused by H. pylori, which you probably already know.

    Good luck!

    So, I am starting to have this crazy stomach pain again...

    I get hungry, I eat, then my stomach feels like it's burning. Then I feel like I need to eat again to make it feel better... my stomach feels good for only a short amount of time. Grrr... :angry:

    I wouldn't have even thought of this, but my friend has been treated for H Pylori and her symptoms were very similar to mine.

    I know that an active H.pylori infection is pretty common among Celiacs, so I'm just wondering if some of you could share your symptoms. I'm trying to determine if I should try to move up my GI appt that is scheduled for Nov 11.

    And no... I have not ingested gluten accidentally. These are foods that didn't bother me before. Yesterday, even water hurt my stomach. <_<


  4. corn is gluten-free, but it one of those things we may have become allergic to because of our impaired digestion.

    Kit in St. Louis

    UH... corn is out? i noticed everyone mentioning corn. i thought corn was ok. corn on the cob, in the can for vegetables, corn starch? what is the reason for no corn?

    he has not been able to go completely gluten free. he fights me so bad and his father does not support the whole idea of him having celiac in the first place and refuses to be supportive, and its really hard.

    but mainly i was wondering do these complaints of his sound like celiac or like a maybe he also has something else going on? the first thing drs and everyone says it "celiac.....oh the diarhhea and vomitting". but my son rarely has diarhhea, and i can count on my hands and maybe one foot the amount of times he has vomitted without having a stomach virus.

    someone asked his age, he is 10 and a half and weighs 63 pounds.


  5. I am so sorry for all the pain and discomfort your child is experiencing. It has to be the worst feeling in the world to be helpless against your son's illness, especially if the source isn't identified.

    Yes, all these problems can be caused by celiac disease. I would, however, get a full thyroid panel done on him. thyroid disease and celiac disease go hand in hand. Make sure to ask for the following tests, and get copies of the test results to verify yourself. These are VERY often misinterpreted by docs. Get a TSH, a free T4 and free T3 (NOT total t3 and t4!!!), If these look hinky (you want free T3 to be at the TOP of the normal range), you'll want antibody tests (TSI and anti-TPO).

    I'd google celiac/thyroid and see if anything you find makes sense to you and your doc.

    Good luck! Let us know how he is doing.

    Kit in St. Louis

    My son was diagnosed with celiac by a ped GI in July of this year after a upper scope showed inflamation from the esophagus all the way to the duodenum and genetic blood test that the ped GI said was positive. He NEVER feels good. I was wondering, what are the most common symptoms each of you see in your child with celiac? I am wondering if we should be looking for another diagnosis........

    constant headaches

    constant general malaise /just not feeling good/always feeling bad

    spells of palor/tiredness/weakness

    stomach aches.....but here's the kicker-hardly ever diarhhea and only very seldom vomitting that is associated with Celiac

    a month or two of neuropathy of his legs ("mom i feel like electric bolts are shooting in my legs)

    everything hurts....legs, arms, stomach, head

    requires long hours of sleep at night

    had uncontrollable bowel movements, not loose

    itchy skin but not blistery or rashy

    can only eat smalls amounts, literally a few bites and hes full

    yellow teeth, i read somewhere that was a sign of celiac

    and again, did i say that he ALWAYS feels bad

    thanks for yalls input!


  6. Hi David,

    Sorry about the trouble with the kid's doc. I'm pretty sure that testing guidelines, which your doctor should be privy to, recommend that all first-degree relatives of celiac get sera-tests for celiac disease. I think once every six months for two years is what is recommended. What's this doc's problem??? If he/she isn't familiar with the tests, he should be by now. It might be helpful if you brought a list of the tests he needs to your son's doctor and insist they be done. If he refuses, I'd find a better family doc or pediatrician, who is more up to date.

    Kit in St. Louis

    I'm 50 and self diagnosed. I suffered from terrible problems my whole life. At age 3 doubled over in pain and being given muscle relaxers for the cramps, major congestion problems, constant colds and fevers. It all went away by age 6. Then came roaring back my sophmore year in college. Every doctor I saw in my adult life told me it was all due to stress. T back then I che internet saved me 11 years ago. After going on an onfirmed that Gluten was the major problem for me along with soy and dairy.

    5 months after my discovery and feeling great for the first time in my life, I had the blood test done and a biopsy, despite a marginal positive on the blood test the biopsy came back negative. Truthfully I could not haved care less. But I did start to doubt myself at that time. What really clinched it for me was dairy substitute product I started using to make gluten free pancakes. Boy was I sick. Then I find out this product contained trace amounts of barley, not listed on the lablel. This company finally after many complaints placed onn the lable in very tiny print " contains .002% barley protein. In a quart container thats a very small amount.But we all know how sensitive some of our immune systems are. After that I never looked back and I still feel good after all of this time.Ijust wish I had not suffered for 37 years at the hands of ignorant ,arrogant doctors.

    My current problem is our 2 year old son. He weighs 21 lbs, seems mostly healthy, expect he just doesn't put on much weight. He gained one pound between May and October of this year. I wanted him tested when he was 1 and our doctor woould not agree, Ironically his daughter has celiac, but jake is not showing the "usual symptoms. My wife thinks I'm being paranoid (she's the daughter of a research neurologist), so does my father in law.

    Our new pediatrician (the other one retired) refuses to do the blood test. he wants me to take the kid to a pediatric Gastroentorologist , that means two copays and insurance payments, which bothers me greatly. I see no reason why a pediatric doctor can't draw the blood and send it to a lab.

    I hate the medical system in the US.


  7. I was diagnosed by Dr. Dandalides in Chesapeake. Their office is near Chesapeake General Hospital in Great Bridge.

    I would recommend Dr. Malik, though, in that practice, and Tricia Elya, the PA, who is VERY knowledgeable and attended the celiac NIH conference in 2004.

    Dr. Dandalides pretty much did the test and told me to "go to the internet." He was unaware of secondary problems of celiac disease, and at that time, in 2002, pretty clueless. Dr. Malik, I've heard, is much better.

    Good luck!

    Kit, now in St. Louis


  8. I was just recently diagnosed with celiac and have been on my diet for about a week. I was just wondering if their are any famous people or celebrities that are known to have celiac disease?

    Susie Essman from "Curb Your Enthusiasm" was diagnosed with celiac disease a few years ago...around, say 2003?

    She plays Jeff's wife. Jeff is Larry's manager.


  9. I realize that I'm replying to myself. But I went on some of the SCD sites to see what I could find. Chocolate appears to be some big mystery and no one seems to be able to give an answer as to why it can't be eaten on the diet. Anybody knowledgeable about this? Thanks!

    Dear Gentleheart,

    I've been wrestling with that question myself, of late. I am guessing the problem with, say, cocoa powder is that it's irritating to the digestive tract.

    I am on the SCD too, but not for Crohn's or IBS. I just have some very uncomfortable bloating when I eat starch or polysaccarides. Since I don't have diarrhea or other digestive complaints, I'm a little looser than Elaine recommends.

    I do stay off white sugar and obvious starches, but I eat some illegal things once in a while and have no trouble as long as I don't go overboard and I have lots of days between on strict SCD.

    Today, though, in my coffee, I put in some delicious Droste's cocoa powder with the honey I always use. Dang it was good. I say try it once and see if you're alright unless you have cramping or diarrhea still.

    I was diagnosed with celiac disease May 1, 2001.


  10. If you were on a gluten-free diet when you got your blood test, you can't be diagnosed properly. The test measures antibodies in your blood. Celiacs only make antibodies in response to gluten. If you want a proper diagnosis, you have to do a gluten challenge. I can't believe your doc tested you although you have been gluten free. It's a wasted test.

    You should see a GI who understands celiac disease. In what city will you be going to a doctor? Maybe we on the boards can help you find a good one.

    Another cause of bloating in a healing celiac is SIBO, or small intestinal bacterial overgrowth. It can be treated with the Specific Carbohydrate Diet (see Elaine Gottshall's "Breaking the Vicious Cycle") or with intestine-specific antibiotics. If your doctor isn't aware that this is a common occurence after celiac disease diagnosis, you should get another GI or try to educate him.

    Others are on the right track about other food allergies. I'd investigate that first.

    Kit


  11. Thanks to all of you for your input. I will definitely try to cut out the dairy, although I will find this difficult. I did finally go back and they did a blood test for celiacs disease which came back negative. They did however find out ( after a few very uncomfortable tests ) that I have an intestinal parasite, and diverticulosis. They told me to stay away from nuts and seeds. I do feel MUCH better. but not 100% and I'm staying gluten free.

    If I go off of dairy does that include any and everything that has milk in it?? Could I try lactose free cheese or milk?? And is casein found in all dairy products??


  12. It took me a while but I finally found myself a good doctor that seems to understand Celiac. However my daughters pediatrician doesn't really get it. Based on my Celiac he ordered a test for her and it came back "mildly positive" and he told us that mildly positive doesn't really mean positive. Well in my book it does!

    He also said, oh wow you don't want to have this, its so hard, wow its so hard almost no one can do it. Well that sets us up for failure. My daughter has a life threatening peanut allergy so she is very upset at now having to avoid gluten too. So when she cheats she says... "Mom even my doctor said no one can really do this".

    It makes me so angry and I told him, hey I've been doing it for 4 years and I don't find it hard at all, its second nature. I do know from reading this list a lot of people DO find it hard and do cheat occasionally or even dream about gluten foods. I never did, sure it took a while to figure where the gluten was hiding but I don't feel gypped at all.

    My 2 cents!

    Susan


  13. Thanks for the opportunity to air some peeves.

    1.) It would be helpful if doctors were taught more about the healing process of the bowel in a celiac patient. The doctor should understand the various stages of healing and the challenges that come with each. For instance, a patient with recovering villi will absorb medications differently than one with severe leaky gut.

    Also, patients often develop corn allergies and become lactose intolerant when they didn't believe themselves to be so before.

    2.) Also, healing villi isn't the only concern for a newly diagnosed celiac. Doctors should be alert to the possible emotional, and other central nervous system aspects of the disease and make sure the patient knows that many celiacs, like her, have celiac disease-related CNS issues (depression, epilepsy, anxiety) and need aggressive care. I have spoken to doctors who feel a relationship between celiac disease and CNS issues is impossible, that antibodies, for instance, can't pass the blood-brain barrier.

    3.) I'd like it if doctors knew to look for physical signs of celiac disease such as stunted growth and DH. DH may look similar to acne in some people, but itches much more. Knowing to look for the purple-dot scarring of past DH rashes would make some celiac disease detection easy. Doctors should know that dermatologists misdiagnose DH as acne, and should ask their patients about skin problems.

    4.) A huge concern to new celiac patients is small intestinal bacterial overgrowth. Doctors need to become familiar with it and learn how to detect and treat it. The damage done to the small intestine during active illness seems to make its environment more palatable to large intestine e.coli. E.coli can be a very bad character when he leaves home and is suspected by researchers to be involved in the evolution of other intestinal problems such as Crohn's, ulcerative colitis, and IBD.

    5.) Last of all, I would hope that doctors look into Elaine Gottschall's "Specific Carbohydrate Diet" and learn what the difference in effect on the bowel is between monosaccharides and polysaccharides. Polysaccharides don't break down into single molecules early in the digestive process so they remain a potent source of energy for unhealthy bacteria who thrive on it. If e.coli have become emboldened by the poor health of the small intestine and have crawled up beyond their normal bounds, they can wreak havoc on the digestion and even the immune system as intestinal contents leak into the abdominal cavity. The implications that this process has for the "brain-gut" premise should be a topic of open debate, because its challenges can have a devastating effect on the whole patient.

    6.) Oh, one more thing. Doctors should know that hypochondria is a very rare mental illness that only affects one in a thousand people. People really sick aren't going to be motivated to lie about their condition, they should be given the benefit of the doubt. The four women over forty (all strangers) in my painting class a few years ago, had all been told at one time or another, by a doctor, that their physical issue was "all in their heads." The odds on them all being afflicted with hypochondria is astronomical, yet they all paid doctors to give them this substandard, disrespectful treatment. As the fifth of these women, I too was once told, by a psychologist, that since doctors could find nothing wrong with me, I was a hypochondriac. I didn't get diagnosed for another ten years, after seeing more than twenty different doctors. I'm recovering nicely, thank you.

    People like me have cause to be very careful of our future treatment and we have learned to take responsibility for our care. This should be respected if trust is going to be renewed.

    Sincerely,

    Kit, diagnosed May 01, 2002 with celiac disease, Aug. 2002 with Graves' disease.


  14. I'm a first year med student with Celiac Disease, and I have a first-hand experience with the ignorance of some doctors concerning all things Celiac--which got me thinking... I'm in class with approximately 150 future doctors, so why not educate them. At some point, ideally in the next semester, I want to coordinate with our local Celiac support group to have an open forum with my classmates to help them understand what this diagnosis means. I also want them to taste our food (and see how much it costs).

    Since we are a patient population that has just cause to mistrust doctors, what do you want these future docs to know about Celiac Disease (any aspect)?