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Gerri

14th Day Back On Gluten

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I agree with Ravenwoodglass.

An overwhelming response to a gluten-free diet is a far more accurate diagnosis than any blood test or biopsy.

I honestly can't understand why anyone would feel they need to get official approval from a doctor when the tests the doctor offers are less accurate than an overwhelming response to a gluten-free diet.

If a child has an obvious reaction to peanuts, no doctor on earth would say, "let's feed him peanuts, and only call him allergic if he has an anaphylactic reaction."

If it were rat poison instead of gluten, would you still need testing to confirm that your body can't handle it?

I know, I know. I can't completely explain it. Like one alternative medicine practitioner I see said to me when I asked about blood tests, she said she thought my health care dollars could be better spent. Then, she shrugged and asked me, "So, what would be different? Would you get a member's card or something?"

I think I'm thinking I need a concrete diagnosis to pursue and even be pushy about staying on top of my kids. So far I think everbody thinks I'm looking for my kids to be sick when they aren't. I've just read so much info on other markers for celiac and that some with my one son's genetic pair are Th1 or T-cell mediated rather than IgA. So, the IgA tests aren't even valid. He's also very highly predisposed to Type 1 diabetes because one, he is male and two, he has the combo DQ2 + DQ 8.

My other son had positive enterolab results while my other one didn't so I guess I'm loading ammunition to fight with doctores about THEM, not necessarily myself. I can follow a gluten free diet and am very, very happy doing so. But doctors just don't see it the way we all here do. They want proof, you know and if I had proof in myself I would be better equipped to say, "No, the negative ttG isn't enough for me. I want it done every year and I want these tests done as well."

There's a pediatric GI in Winston Salem, NC that I'd almost be willing to drive the 2 hours to see just to have someone take me seriously. The pediatric GI I took my kids to wasn't exactly specifically condescending to me. He's just pompous probably all the time. I kept telling him my mother was the one with diagnosed Celiac and that I had simply, "made lifestyle changes." But, he kept thinking I was self-diagnosing myself with celiac and forgetting our established family history and so was quick to dismiss alot of things.

That's my logic, sound or unsound. Gluten-free diets are the fad now among the general population even without celiac diagnosis and I think practitioners roll there eyes and say, "Here's another one." Isn't a shame they resent having to help us stay healthy? Really! What did they go to medical school for? There are other ways to make a comfortable living.

Thanks for all the responses!

Tip

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Here is some information that may be of use to you regarding the other conditions that produce TtG and AGA antibodies. Apologies to the ooriginal poster for the brief threadjack.

Sorry, I guess I did take over. I almost started a new thread and I guess I should have. My apologies as well.

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I would worry about stroke......

Tip,

Thanks for explaining.... Thank God my DD has NOT had any grand mal's. I don't like even what we are having though. Wonder why she is reacting to spelt after eating it for years. ??? Seizures seems like an odd reaction to food. Anyone heard of seizing to be an "allergic" reaction? My DD has Asthma as an allery to it.

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Google "Migraine" + "Stroke" and you will learn A LOT. Here is just one quick one....there are TONS more research available:

MYTH: MIGRAINE IS NOT LIFE THREATENING, JUST ANNOYING.

REALITY: MIGRAINE CAN BE LIFE THREATENING, INDUCING SUCH CONDITIONS AS STROKE AND COMA.

Migraine can induce a host of serious physical conditions: strokes, aneurysms, permanent visual loss, severe dental problems, coma and even death.

According to the New England Journal of Medicine, "migraine can sometimes lead to ischemic stroke and stroke can sometimes be aggravated by or associated with the development of migraine." Twenty-seven percent of all strokes suffered by persons under the age of 45 are caused by Migraine. Stroke is the third leading cause of death in this country. In addition, twenty-five percent of all incidents of cerebral infarction were associated with Migraines, according to the Mayo clinic. Most recently the British Medical Journal reported that after evaluating 14 major Migraine & stroke studies in the U.S. and Canada that Migraineurs are 2.2 times greater risk for stroke than the non-migraine population. That risk goes up to a staggering 8 times more stroke risk for women Migraineurs on the pill!

Migraine and epileptic seizure disorders are also interrelated. The most intimate interrelationship between the two being Migraine-triggered epilepsy. Migraine affects up to 15% of the epileptic population. In basic terms, Migraine and Epilepsy are both disorders characterized by paroxysmal, transient alterations of Neurologic function, usually with normal Neurologic examinations between events (attacks).

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And yes....foods can cause seizures. I had mild seizures at night for a few months. I would wake up with a weird buzzy feeling in my head. I would be totally disoriented for a bit, not knowing where I was or what was going on. I couldnt speak. A strange taste in my mouth. It took me about 6 months to figure it out. Potatoes!!! Once I cut the potatoes.....no more seizures.

Potatoes are part of the Nightshade family. Nightshades contain neuro-toxins. Makes sense. I avoid ALL nightshades now.

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It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative.

You know, this really jumps out at me. How do they KNOW that it's a false positive? Is it possible that these people had a real positive, but were dismissed because they either didn't have "enough" symptoms, or because they had negative biopsies (and we all know what a sham that is)???

If you are making an antibody to gluten, it seems to me that you have a problem with gluten,no matter what the rest of the tests say, especially if you have a line-up of autoimmune diseases that are frequently concurrent with celiac!!!!

The above quote makes it sound like they're telling tTG+ people with Type 1 Diabetes, Hashimoto's, and autoimmune liver conditions that they can and should eat gluten. Wouldn't it be more prudent to tell them to avoid it before they develop something even worse, especially if ONE of their celiac blood tests were positive??????

GGAAAAAAAAAAAAAAAAAAAAAAAAAHHH! :ph34r:

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If you are making an antibody to gluten, it seems to me that you have a problem with gluten,no matter what the rest of the tests say, especially if you have a line-up of autoimmune diseases that are frequently concurrent with celiac!!!!

The above quote makes it sound like they're telling tTG+ people with Type 1 Diabetes, Hashimoto's, and autoimmune liver conditions that they can and should eat gluten. Wouldn't it be more prudent to tell them to avoid it before they develop something even worse, especially if ONE of their celiac blood tests were positive??????

I do not claim to understand the mechanism of how these autoimmune conditions work and/or inter-relate. However, it does appear that, for some, the prodcuction of TtG may not be caused by ingestion of gluten at all. General consensus is that the TtG is 90 - 95% specific to celiac disease. That leaves some wiggle room for error. The specificity declines in the presence of certain other conditions.

http://cvi.asm.org/cgi/content/full/12/8/941

In conclusion, our data demonstrated that celiac disease prevalence does not differ between the general healthy population and patients with chronic liver diseases. Anti-tTG antibodies can be used as a screening procedure for the healthy population, since they are highly sensitive and specific for celiac disease diagnosis. The prevalence of these autoantibodies is higher in patients with chronic liver diseases compared to healthy controls, but their specificity declines remarkably. In the latter group, the specific IgA anti-tTG reactivity is not associated with celiac disease but appears to be associated with the presence of autoimmune phenomena, cirrhosis, and biochemical markers of cholestasis irrespective of the origin of the liver disease.

Bloodwork and biopsies have false positives and negatives. I'm not saying this to try to change your mind (I have a sense I couldn't even if I tried :lol: ). I think we all agree that there is much work to be done in the testing and diagnosis arena.

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Ravenwoodglass~

Sorry it took so long for you to learn that it was gluten for you. All those unecessary meds! It is great to hear from someone who has had neuro problems related to gluten! This is exactly my concern. I want to know if it gluten now...

Thanks for all that you shared. I will be looking up taxia and UBO's online. All I know is that when she has a smaller "episodes" which has yet to be determined rather they are migraines or seizure, she definitely experiences an extreme ammount of dizziness while her head throbs, sometimes nausea and neckpain, and bodily numbness. She doesn't appear to be clumsy otherwise. My dd is a pro on heelys. Also, she seems to handling the barely just fine after 3 days now. (I know for sure she'd react to wheat in the same day). She did experience sharp head pains and her moods have been difficult. (Who knows how much of that is preadolescent behavior). Her face appears more red than it was a few days ago. She has had this face rash since she was a toddler, redness with what looks like extreme psoarsis. We did the MRI a long time ago. I have been told it was normal.

Also, in terms of depressive symptoms, she started that a loooong time ago. We've had learning and behavior challenges every since day one. I am sure in a couple of years I will have alot on my hands for she is already convinced she is fat and ugly (health problems don't help!). I've been warned about puberty; this is partly why I have wanted to see the neuro, just in case matters get worse.

Thanks for the tips. Love them.

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My middle son's reaction to gluten includes a rash; when he was a baby, his cheeks were so red and chapped-looking people kept asking if he'd been sunburned. And his elbows (on the inside) had such a terrible rash (we were told it was eczema, or psoriasis or contact dermatitis or....), it didn't even feel like skin, and he scratched it all raw and bloody.

This completely disappears off gluten and reappears with it like clockwork. Interestingly, it first appeared hours after his 4-month vaccines, and the dermatologist said it was a drug reaction.

SO you might want to do some research on vaccines, as well. www.nvic.org is a good place to start.

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MYTH: MIGRAINE IS NOT LIFE THREATENING, JUST ANNOYING.

REALITY: MIGRAINE CAN BE LIFE THREATENING, INDUCING SUCH CONDITIONS AS STROKE AND COMA.

I went to that site and it was very interesting. It makes me wonder how many people who get severe migraines have Celiac disease. JFK had Addison's disease which can be associated with celiac. I've read that a lot of people get migraines. Maybe that's reaching a bit. But, that isn't to dismiss that there is such thing as a Migraine disease. Mine are just really bad headaches that make me nauseated and photosensitive but some of the folks I work with have really debilitating Migraines.

The part about migraine sufferers being more likely to have a stroke makes sense as the vessels dilate rather than constrict. If a person has a vessel with a weak spot (aneurysm) it would fill with more blood with vasodilation and be more likely to rupture. My husband's grandmother always complained of severe headaches and she died suddenly of a ruptured aneurysm at age 54.

Interesting

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Bloodwork and biopsies have false positives and negatives. I'm not saying this to try to change your mind (I have a sense I couldn't even if I tried :lol: ). I think we all agree that there is much work to be done in the testing and diagnosis arena.

You are completely correct and I could definitely change my mind. I've been eating gluten for only 24hrs now and I'm starting to feel it. I just want to be taken seriously. But, what should it matter what other people think, hugh? I'm not going to change arrogant doctor's ways by doing this am I? In the end when it's all negative I'm still going to remain gluten-free and I'm still going to advocate for my kids, right? There! I was talked out of it. :D

Why did I do this to myself? I also manage to keep a lot of weight off on a gluten-free diet. I don't fool with making bread or finding substitutes. I normally just eat meat, fruits, and vegetables to keep it simple. Occasionally I'll eat Glutano pretzels or corn pasta and Pamela makes a really good chocolate chunk cookie that I look. Other than that I just don't eat the grains and I don't miss it. I feel light and clean the way I eat.

I didn't do it all by eating gluten-free but since Oct. '05 I've gone from 220lbs to 142lbs(as of this morning). On my weight loss journey was when my health awareness really kicked in and at the same time my son's symptoms came to a head and in reading about a gluten-free/casein-free diet for him I stumbled upon Celiac info and the puzzle pieces just began to fall in to place. And what do you know? My mother who has autoimmune hepatitis and Grave's disease got diagnosed - with my prompting - and I ended my 13 year struggle with severe depression coupled with occasional bouts of mania. I'm weaning off my mood-stabilizers and doing fine! I can go running now and my knees don't hurt. The neck pain that I thought I was going to have to see a specialist about went away. So, yes, why go back to that? Why risk becoming that slug that I used to be?

It's encouraging to have a Celiac who was dx by biopsy say that the proof is not always in the tests but in the gluten-free pudding. A co-worker of mine has a 13 month old just diagnosed and I don't think she thinks much of my side of the Celiac story. Her son has the classic GI issues and failure to thrive but in my house it's all behavior and neuro.

I was having a moment of doubt, I guess. I think I'll finish my glass of Mead and dream of my fennel and mandarin orange salad I wasn't going to make but now AM going to.

That was certainly short-lived!

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A co-worker of mine has a 13 month old just diagnosed and I don't think she thinks much of my side of the Celiac story. Her son has the classic GI issues and failure to thrive but in my house it's all behavior and neuro.

How sad. I would have thought that she would be thrilled that #1) you found a big answer to some big problems and #2) that you both ended up with the same, so you could share info, experiences, etc.

I have seen, though, a really strange phenomena on this and other celiac sites. It seems that some people turn the "Is it Celiac or Gluten Intolerance?" question into a sick sort of competition, where in their minds, if you don't have the positive biopsy, you can't join Their Club.

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How sad. I would have thought that she would be thrilled that #1) you found a big answer to some big problems and #2) that you both ended up with the same, so you could share info, experiences, etc.

I have seen, though, a really strange phenomena on this and other celiac sites. It seems that some people turn the "Is it Celiac or Gluten Intolerance?" question into a sick sort of competition, where in their minds, if you don't have the positive biopsy, you can't join Their Club.

Exactly!!! My friend isn't like that, though. She was very relieved to have an answer and we've shared information. I must've worded that wrong. I just meant that I'm speculating and part of it could be paranoia on my part. I just stumbled upon all of this. It's hard to tell people who didn't know you when you were a wreck that you used to be that way. They can't see it. And nobody can feel what a person feels inside. I didn't meant to sound judgmental.

And that's the whole issue with the "Gold Standard" biopsy. When ABSOLUTES are set with a disease with such wide and varied symptoms and known discrepancies in testing it just isn't a good idea. I see this in the hospital all the time. Everyone wants clear cut answers, black and white and it just isn't like that. All the different areas of medicine set their "standards and guidelines" and everyone has to fall into a category and because there's no allowance to think outside the box, patients get overlooked. If an obstetrician practices in a manner that is different from their professional organization (ACOG) then she isn't practicing according to standards and would be at risk in a lawsuit. I don't like this trend. The objective to keep MD's up to snuff was admirable but it's too stringent. Those stringent, hard and fast guidelines leave people suffering for years with Celiac issues.

I know two people who have had positive blood work and biopsies and they don't follow the diet. I'm not judging them because I know it isn't easy but I just wonder if they don't really know all the implications. Did their doc not educate them about the future? One of them is already falling apart so badly she probably feels like it's pointless now. The damage is done.

Thanks for hitting the nail on the head and reminding me it's okay not to fit in. :)

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My middle son's reaction to gluten includes a rash; when he was a baby, his cheeks were so red and chapped-looking people kept asking if he'd been sunburned. And his elbows (on the inside) had such a terrible rash (we were told it was eczema, or psoriasis or contact dermatitis or....), it didn't even feel like skin, and he scratched it all raw and bloody.

This completely disappears off gluten and reappears with it like clockwork. Interestingly, it first appeared hours after his 4-month vaccines, and the dermatologist said it was a drug reaction.

SO you might want to do some research on vaccines, as well. www.nvic.org is a good place to start.

~Fiddle-Faddle~

We see remarkable improvements in all her symptoms when off gluten, EXCEPT the rash. I thought it was looking like it was atleast 20% better, then it flared up again. She has been gluten free for approx. 6 weeks with a few set backs along the way. She is 11 yrs. old and her body image is extremely unhealthy, due to this stinkin' rash. (Also, extreme psorsasis covers her body. She reports kids staring and asking questions). The rash appeared sometime in her first year, and yes, she is vaccinated.

How long does it take for your son's rash to disappear after a glutening?

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One of them is already falling apart so badly she probably feels like it's pointless now. The damage is done.

Tip

Can you possibly guide this woman here and through some posts? There are some oldtimers like myself who were close to death when diagnosed and have had an amazing recovery from a lot of their issues. While it is true that for some of us not all the damage can be reversed we will find an incredible resolution and possible remission of problems that we never would have considered to be gluten related. I NEVER expected to be able to walk freely and to be able to cut glass and even type without pain again ever in my life. After all I had been told for years that the mild help with pain I got from the very strong meds I was on was the best the doctors could do. Six months before diagnosis we were remodeling in preperation for me to be wheelchair bound soon. Instead I got diagnosed and six months later my DD found me at the top of the stairs crying uncontrolablly from joy after RUNNING up the stairs without even thinking about it. No matter how far down we have gotten there is always reason for hope.

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You know, this really jumps out at me. How do they KNOW that it's a false positive? Is it possible that these people had a real positive, but were dismissed because they either didn't have "enough" symptoms, or because they had negative biopsies (and we all know what a sham that is)???

If you are making an antibody to gluten, it seems to me that you have a problem with gluten,no matter what the rest of the tests say, especially if you have a line-up of autoimmune diseases that are frequently concurrent with celiac!!!!

The above quote makes it sound like they're telling tTG+ people with Type 1 Diabetes, Hashimoto's, and autoimmune liver conditions that they can and should eat gluten. Wouldn't it be more prudent to tell them to avoid it before they develop something even worse, especially if ONE of their celiac blood tests were positive??????

GGAAAAAAAAAAAAAAAAAAAAAAAAAHHH! :ph34r:

I agree with you completely. I get so frustrated when I see stuff about the supposed false postives with so many diseases that are autoimmune related and quite possibly directly related for many to gluten injestion. But hey if they actually diagnosed these folks and had them on the diet and the disorders go into remission then they won't have a patient coming into their offices that they can toss meds to every other week.

My brothers death was directly related to autoimmune liver destruction. Was he celiac, well we will never be able to know but the likelyhood is high when you consider how many in my family are. I wonder if they would have considered a positive blood on him 'false positive'. Would I have been considered a false positive if they had gene tested and found the US recognized RA gene, that in other countries is a recognized celiac gene? What do you think? I think the doctors would still have me on a high gluten diet, after all my GI issues were all stress and lack of fiber in their minds and had nothing to do with my arthritis and other autoimmune issue, currently in remission on the diet.

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Would I have been considered a false positive if they had gene tested and found the US recognized RA gene, that in other countries is a recognized celiac gene?

What is the RA gene? I'm only familiar with the HLA's.

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I had a negative for my blood tests as well. Well, not a negative; just not a positive. I stopped eating gluten and felt a TON better. My doctor told me, "If it quacks like a duck and looks like a duck.... it's a duck"

If you feel better on a gluten free diet, I think you have your answer, regardless of the diagnosis.

:)

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~Fiddle-Faddle~

accinated.

How long does it take for your son's rash to disappear after a glutening?

It improved noticeably within a few days, but took several weeks, maybe even a couple of months to completely clear. His was so bad at the elbows, it didn't feel like skin. It was stiff, like a really thick layer of blisters. After it healed, it was white, a lot like scar tissue, for quite a while.

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I personally don't think it's worth it to go back on gluten. My brother went back on gluten after being off of it for five months to do another blood test for a new doctor. He was on gluten for 5 weeks and had 2 blood tests and still came back negative. I really worry that you are putting yourself through this agony for nothing.

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My reactions to barley are much more delayed than for wheat. After eating wheat I'm usually very sick within the hour. Last week I ate a Nanna's cookie that I accidentally overlooked was "No Wheat" instead of "No Gluten" and halfway through wondered why it was so tasty - it was made of barley flour. Aside from some mild geographic tongue that evening, nothing happened for about 4 days, and then I started to feel lightheaded and bloated, and got blisters under my tongue and a bunch of very irritating exema on my feet that looks like bright red coffee mug stain circles. I've been gluten free for a year.

Ravenwood glass, & Ursa Major,

Regarding rather it's an allergic reaction, my daughter did test for wheat allergy years ago. Yesterday and today I gave her some barely to isolate the gluten from the wheat to see what would happen. (Advice from this forum). No reaction so far! Now I am really wondering if it actually the wheat instead of gluten. I had been feeding her spelt for about 4 years and all a sudden she started having seizures! Since going off Spelt, her Asthma has improved as well. Funny thing, when I said to her, "Isn't it great you haven't reacted to the barely yet?" my daughter responds, "Mommy, please don't put me back on gluten!!!" She actually *loves* her gluten-free diet because it is a tasty improvement to spelt products. Plus, she knows how much better she feels. Isolating the gluten was done in order to help me decide if I think she may be Celiac. Knowing rather it is a gluten intolerance,celiac or an allergy has been driving me nuts.

Thank you for your posts.

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