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  1. Do full workups now include vitamin deficiency testing? Wow, that is really good news.

    Every "full workup" I've ever had included hundreds of dollars of blood tests--and the only deficiency ever looked for was anemia.

    If your doctor is smart enough to be looking for vitamin deficiencies, (s)he is likely smart enough to have looked for thyroid problems, which would have been my next suggestion.


  2. You might want to read the whole thread (and others) at http://www.menieres.org/forum/index.php/topic,25945.0.html, as there are other ideas there that may be helpful for your dizziness and ataxia.

    One other idea mentioned there is B12 deficiency.

    A common symptom of celiac is acid reflux, which is almost always treated by long-term Prilosec. Long-term Prilosec use causes B12 deficiency--which can cause the same symptoms as Meniere's. And with intestinal malabsorption, which is practically the rule in celiac disease, many vitamin deficiencies are common, including B12 deficiency, even when Prilosec isn't used.


  3. According to http://www.menieres.org/forum/index.php/topic,25945.0.html:

    "Many people here have found that certain foods trigger Meniere's symptoms. The most common offending food seems to be wheat. The protein in wheat is called gluten, and it is also found in other grains (barley, rye, and oats).

    Celiac Disease is an autoimmune disorder triggered by gluten, and increasingly common symptoms reported in celiac forums include tinnitus, dizziness, and hearing loss. The anecdotal evidence indicates that removing gluten from the diet eliminates symptoms. Celiac Disease has historically been defined by the results of an intestinal biopsy, but the trend is now to diagnose it by blood work, which looks for antibodies to gluten as well as endomysial antibodies (andtibodies against oneself). Celiac Disease and gluten intolerance are often used interchangeably to describe the same set of symptoms; there is much debate on whether gluten intolerance is simply early-stage celiac or whether it is a separate condition, but the treatment is the same, either way--a gluten-free diet.

    Celiac disease is one of the leading causes of intestinal malabsorption, and is linked with many other common autoimmune disorders, including thyroid disease, diabetes, rheumatoid arthritis, lupus, and MS. Vitamin deficiencies are common to all of them.

    While celiac is noted to CAUSE vitamin deficiencies, it is also possible that vitamin D deficiency likely plays a role in causing celiac, and perhaps other autoimmune conditions as well."


  4. I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.

    I don't think any test can tell you "for sure."

    Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

    Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

    Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

    If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

    It doesn't mean that they will all develop celiac.

    But it means that you should be on the lookout for any symptoms that might indicate a problem with gluten. Yes, this means the obvious intestinal symptoms, but there are other symptoms as well, and for some people, the autoimmune reaction mysteriously skips the intestines, or for some, their intestinal damage is "silent," meaning that they have damage but no discernable symptoms.

    Other possible symptoms of celiac:

    eczema/psoriasis

    thyroid issues

    type 1 diabetes

    joint pain

    migraines/headache

    vestibular issues (dizziness, tinnitus, etc)

    neurological issues (including depression and bipolar disorder)

    unexplained weight GAIN

    carbohydrate "addiction" (particularly to wheat, obviously)

    repeated candida infections

    anemia

    unexplained vitamin deficiencies (for example, in spite of supplements, which would indicate malabsorption)

    small stature

    ADD/ADHD/Asperger's/autism diagnosis

    unexplained tiredness/exhaustion

    I'm probably leaving a whole bunch out. I'm sure someone will fill in whatever I'm missing!


  5. Annalise Roberts has a cookbook of recipes specifically for the Zojirushi bread machine:

    Gluten-Free Baking Classics For The Bread Machine.

    You can probably find a used one on-line.

    Many of her recipes also appear on www.foodphilosopher.com.

    You can also try www.betterbatter.org, which has a ton of very good recipes, and they sell a very nice gluten-free flour mix that is less expensive than most, especially if you buy it in bulk (they will ship it to you in 5-pound boxes, which is very manageable, and they're easy to store).

    I go back and forth between the betterbatter recipes and Annalise Roberts' recipes (sometimes I just use the betterbatter flour in the Annalise Roberts recipe!).

    Really, the only thing the bread mixes add is salt,sugar and a yeast packet. That's very few ingredients, and not a lot of extra convenience for the high price of a specialty mix.

    You can also save a lot of $ if you buy yeast in bulk, from Costco or Sam's Club, and just measure it out with a teaspoon. Those little packets literally triple or quadruple the price.


  6. Just a couple of comments regarding the gluten-free thing.

    First, gluten intolerance and wheat allergies are two very different things. Know the difference before you go bashing a restaurant for not listing wheat as an allergen, when your condition is intolerance not allergy. Wheat is not a common allergen.

    Actually, wheat IS a common allergen, and if it is an ingredient, it is now required to be clearly listed on labels of food products made in the US and in Europe.


  7. If it were my child, I would take him off gluten immediately. And, in fact, that is exactly what I did do with my children.

    If it were a peanut reaction, no way would they make you feed your child peanuts until he reacted enough for them to MAYBE see it in blood work or endoscopy. And gluten-loading for a few days is NOT enough for the test to be accurate--and these tests are notoriously inaccurate in young children, anyway.

    If going off gluten is not the answer, you can always go back on gluten and then do further testing. But it's already clear that gluten is involved.

    Our medical system is absolutely brilliant in many respects. But in this case, I believe it is completely failing you.


  8. I have had very similar symptoms to what you describe.

    Various doctors came up with various diagnoses: migraine disorder, cochlear hydrops, Meniere's Disease, Benign Positional Vertigo, etc.

    Turned out, I had B12 deficiency, which probably started before I went off gluten, and was exacerbated by 10 years of Prilosec (for gluten-induced acid reflux). Those acid blockers block the acid we need to properly absorb B12, and the resulting deficiency can cause all kinds of neuro symptoms, including dizziness, tinnitus, fluctuating hearing loss, etc.

    If you are taking acid blockers, DO NOT QUIT COLD TURKEY. You wil have a rebound reaction that will give you the worst acid reflux of your life. Wean off very slowly!

    Vegans are also at extremely high risk for B12 deficiency, unless they are taking adequate suppplementation, as red meat is the primary dietary source of B12. (I always thought it was in leafy greens, but it isn't--the other B vitamins are, but not B12.)

    Also, don't just start taking B12. Get a baseline test first, and be aware that what is currently considered "low normal" serum B12 in the US (200) is well below the standard in some other countries, and that anything under 500 can cause neuro problems.

    The pernicious anemia websites recommend sublingual methylcobalamin (preferably with folic acid), NOT cyanocobalamin. The sublingual methylcobalamin is considered to be nearly as effective as B12 shots.

    In my case there was also a viral component and a mechanical component.

    The viral component was a reactivated chicken pox virus (herpes zoster) that, in my case, affected the spinal nerve that went closest to the ear. I had two "attacks" like you describe, several months apart. In both cases, these attacks exactly coincided with my husband's shingles attacks. (I've had shingles, decades ago--it's no picnic. UGH.) For whatever reason, this seemed to trigger my own virus to come out of dormancy, and caused/exacerbated symptoms, including nystagmus and that feeling of fullness in the ear.

    For me, that was treated with L-lysine, which for me, works very well, but most people seem to need antivirals for effective treatment of persistent herpes virus (chicken pox/shingles is herpes zoster).

    The mechanical component was vertebral misalignment in my neck (from wearing my arm in a sling for a month following a severe shoulder injury). When this was corrected by a chiropractor, the tinnitus, neck and head pain, and brain fog instantly disappeared and never returned. I was also given a stern lecture by the chiropractor about how sleeping with too many pillows, reading in bed, and hunching over a computer can screw up your neck.

    There are migraine support forums and Meniere's support forums that provide quite a lot of information. The only thing is, both migraine disorder and Meniere's Disease are actually syndromes--meaning that they are a collection of symptoms of unknown origin. In both cases, these are frequently diagnosed as such, but without ruling out all possible causes of the same symptoms (like B12 deficiency, viral problems, vertebral misalignment, and other factors, like TMJ, food allergies, and systemic candida infection).

    And not one of the doctors who tried to diagnose me with a syndrome bothered to consider any of those possibilities, let alone a combination.

    Is your neuro the only neuro your insurance will cover? Seems to me an immediate follow-up visit is indicated. My neurologist did have some interesting supplement recommendations for migraine disorder: magnesium, B-complex vitamin supplement, butterbur, and coenzyme Q10. You might want to ask your neurologist about these.

    Best of luck to you. These symptoms are very frightening. I don't know that anything I learned will correspond exactly to your situation (everybody's different), but at least it gives you a starting point to do more research.


  9. I'm just wondering if you've had your thyroid checked, and also if your doctor is "up" on the latest levels deemed to be optimal?

    I had heavy, extremely painful periods last year. The OBGYN did NOT think to check my thyroid levels, even though I'd been treated for Hashimoto's for years. Later, I had surgery for something else, and the surgeon checked the levels and missed that they were low, becuase he went by the "old" levels that he'd been taught in medical school.

    My endocrinologist caught it at my yearly check up.

    And I had all the common symptoms of low thyroid, but because it affects brain function as well, I didn't realize I was having typical symptoms. (And believe me, I could write a book on thyroid symptoms, I know them intimately :rolleyes: That's how bad my brain function was!)

    My endocrinologist upped my dosage, all my symptoms disappeared, and my periods went back to normal. I do have one fibroid (which was causing the pain), which the OBGYN said was going to get worse, but there's been much, much less pain since the thyroid adjustment.

    You sound like you are extremely thorough in your own research, so you're probably on top of this already, but I thought I'd put it out there just in case. You know how autoimmune thyroid disorders go hand in hand with celiac...and low thyroid can cause depression symptoms, too.


  10. My apologies--it is much muddier than what my initial impression was, when I first looked up PSC. If you like, I can edit my previous post.

    It looks like PSC and celiac are strongly linked, and it SEEMS that untreated celiac actually causes the PSC? At least, that's the impression I'm coming away with. I didn't see a single case of PSC linked with celiac that had already been "treated" via gluten-free diet BEFORE onset of PSC, but maybe I missed something.

    These were the studies I looked at earler. I think they all mention PSC. At least one of them specified that PSC is not reversed by a gluten-free diet. Others said that SOME liver diseases are reversed by a gluten-free diet. Most just discussed the reversibility of liver disease without specifying which liver disease until later.

    But there's a lot we don't know here. First of all, the study that said PSC was not reversed by the gluten-free diet was from 1989. That's a long time ago. How strict was those peoples' diet? Did they cheat? Did they eat wheat starch? (Not sure if the study was done in Europe, where wheat starch is allowed on a gluten-free diet.) Did thye consume dairy? Alcohol? What else were they eating? Were they vitamin-deficient? On any other medications? Did they exercise regularly?

    While I was obviously wrong to say that PSC can be cured by the gluten-free diet, I wouldn't assume for a second that there isn't a darned good chance.

    How many of us were surprised to see our (rashes) (migraines) (dizziness) (tinnitus) (brain fog) (joint pain) (infertility) (alopecia) (thyroid disease) (_______) (fill in the blank) to reverse from diet alone? How many of us had doctors tell us that those symptoms had nothing to do with gluten, and that we would just have to live with them, or take medications for the rest of our lives? Heck, how many of us were told that our INTESTINAL symptoms had nothing to do with diet?

    Again, I apologize for wrongly stating that a clear cure has already been recognized for PSC. But, given the odds here that we've seen with gluten and autoimmune disorders, I think it's premature to believe that a gluten-free (and cf) diet isn't at least part of the cure.

    http://drmarkrussell.com/wp-content/uploads/2010/02/Liver-Involvement-in-Celiac-Disease.pdf :


  11. 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.

    http://www.rense.com/general/pro.htm

    "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:

    http://www.topix.com/forum/drug/prozac/TI4OF26VN51VTP1FK

    http://www.depressionforums.org/forums/topic/73383-prozac-withdrawal-have-i-come-off-of-it-too-quick/

    http://www.depressionforums.org/forums/topic/61396-cure-or-solution-for-antidepressant-withdrawal/

    http://www.depressionforums.org/forums/topic/46751-prozac-withdrawal/

    http://www.depressionforums.org/forums/topic/35776-prozac-withdrawal-help-please/

    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...


  12. .....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.

    http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Do-Celiac-Women-Suffer-More-From-Pelvic-Pain-Dysmenorrhea-Or-Endometriosis.htm


  13. 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:

    http://fondation-maladies-degeneratives.org/Articles/a0f14213437ad7df55b7176fcea35bdf.pdf

    http://en.wikipedia.org/wiki/Gluten_exorphine

    http://www.greatplainslaboratory.com/home/eng/peptide.asp

    "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.


  14. 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.

    http://www.ncbi.nlm.nih.gov/pubmed/11910339

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

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3212773/

    "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?


  15. First of all, I think that the cravings effect of gluten is extremely strong, and takes weeks of 100% gluten-free to go away, even for an adult.

    Secondly, I agree that at this point, you should not be calling gluten-eaters "normal." It just makes your daughter feel like she's NOT normal, and that there is something WRONG with her. She doesn't need that!

    I would never have managed to keep just myself gluten-free without making the household gluten-free.

    Basically, I told my family that I would promise to make everything taste good, but that I was NOT going to cook two sets of breakfasts and dinners. If they wanted cookies, cakes, etc., they would either have to eat them out, or eat them gluten-free (home-made gluten-free, which is a far cry from the styrofoam premade gluten-free foods). They had their own bread for lunch-time sandwiches, but everything else was gluten-free.

    And amazingly, the occasional (once or twice a week) stomach-aches disappeared, the bed-wetting stopped, and rashes disappeared.

    We now believe that all the kids are gluten-intolerant (or perhaps even officially celiac, but we couldn't care less about the official diagnosis). They are all 100% gluten-free, and it really was not hard. But I'm sure it would have been if I had not promised them that I would make a gluten-free version of whatever they were craving, from pizza to cake to cookies to turnovers to pie to bread.

    And like above posters, we also have much more in the way of fresh fruits and veggies than we ever did before. We eat very little processed, pre-fab food, and I think we are healthier for it.

    That may sound like it takes a lot of time, but it's not nearly as much as I thought it would be. Making things from scratch takes 10-20 minutes more prep-time than shoving something in the microwave or shoving chicken nuggets in the stove. Making bread takes 10 minutes of prep time, and then you dump it in the breadmaker and walk away for 90 minutes.

    I have 3 kids and a full-time job, so if I can make it work, I think anybody who wants to can make it work. But a "split" household? I honestly think that's just asking for trouble. I know some people make it work, but with a child of 8,that would be terribly difficult and would likely have some emotional repercussions for the child. Letting the child feel free to eat anything in their own home seems a lot healthier to me.


  16. Ok here is the deal my sister is a type 1 diabetic she had some blood test done a few weeks ago the were routine test she wasnt having any problems. I am pretty worried because a week ago my sisters nurse called and said that my sister was going to have a biopsy when we asked why she said she tested positive for celiac it was a shock to all of us because we had no idea and more importantly my sister has NO symptoms.

    She got the biopsy done today and when i asked the doctor what her blood test results were he simply said she was 25. 25 what anti bodies? He said the average person is suppose to have less then 1. I was so confused and worried that I didnt have time to think everything was going so fast.

    The doctor was confused because he said "your people never get ceiliac disease" I guess somalis or africans in general don't get celiac as much. Also NO one in our immediate family has celiac or has any of the symptoms.

    Regardless my sister has no symptoms 95% of what we eat has wheat in it or gluten. We eat pasta on a regular basis probably 3 times a week if not more. I would imagine someone who is positive would get sick after eating gluten. I constantly ask if she has any stomach problems and she says no she hasn't changed her diet at all and she feels perfectly fine she's tall and she's normal weight.

    After the biopsy the doctor said that everything looked "great" what the hell does that mean? its just hard because my sister already has diabetes an I've seen how much she has struggled with it and adding celiac would just make things harder.

    Has anyone been diagnosed with celiac diesese that didnt have any symptoms? Also what are the normal levels of anti bodies?

    Hi, Worried bro, your sister is lucky to have such a caring brother!

    The normal level of antibodies varies from lab to lab, as each lab can set their own reference range, but in general, healthy people do NOT produce antibodies to gluten, nor gluten-triggered antibodies to their own bodies, which is what the celiac blood tests test for.

    The biopsy has been considered the "gold standard" of diagnosing celiac for the past 50 years or so, because celiac disease is actually defined by the kind of intestinal damage that biopsies look for. However, since celiac was originally defined, the blood work has become much more sophisticated, and is now thought of as more sensitive and accurate than the traditional biopsy. Still, most doctors rigidly adhere to the practice of only diagnosing celiac after a positive biopsy.

    I don't know about Somalis /Africans, but I do know that Asians who have lived in the West, and adopted the typical Western (gluten-filled) diet have a celiac rate that pretty much equals that of Europeans and Americans--after only 1 or 2 generations! (Celiac disease is practically unheard of in Asian countries.)

    There may be many reasons for this; the most obvious reason, of course, is that the American/European diet is SO gluten-heavy. Every meal not only contains gluten, but is heavily gluten-based.

    It is certainly possible that your sister could have celiac disease and have no symptoms. This is called "silent" or "latent" celiac disease.

    It is also possible that there was an error with her blood work. However, I think that the fact that she has type 1 diabetes is a red flag that she is at risk for celiac, because type 1 diabetics IS linked with celiac. I know my endocrinologist routinely tests ALL her diabetic and thyroid patients for celiac, because she sees them together so often.

    Again, this is complicated. It doesn't necessarily mean that one causes the other. I think it's more likely that they share some genetic predisposition, and/or they may have the same environmental triggers.

    Many diabetics do report that their diabetes is much easier to manage if they stop eating gluten. Certainly, diabetics are usually counseled to follow a low-carb diet, but for some, it's not the carbs that are the problem, it's the gluten.


  17. My son just tested positive on the celiac blood test. Since my husband (possible celiac) is gluten free we decided not to wait and are having our son go gluten free from now on. We can't see putting him through what could be months before a biopsy can be scheduled. I am not going to continue to feed him gluten if that is the cause of his muscle pains, visual disturbance and mouth sores. Day 3 of gluten free and his mouth sores are almost completely gone!!!

    I have realized my son has been in size 10 slim jeans going on 3 yrs now. That can't be normal can it? It just dawned on me today that maybe it's because of not getting enough nutrition...because of his celiacs. He never suffered from diarrhea but if he is indeed celiac then his body wasn't absorbing the nutrients like it should. Or...is it common at this age to remain the same size for a few years? I just looked at size 12 jeans today and am shocked...because they look so big...there is no way he'll be in them anytime soon...and he'll have to continue to wear the size 10s.

    I am really hoping now that he is gluten free his body will start to grow more rapidly now. Gosh, to think if we went on without knowing...I guess I can see why short stature is actually common in celiacs. Has anyone noticed once gluten free their kids finally start to grow?

    First of all, I applaud you for starting your son on the gluten-free diet already. Many parents would wait for official approval from the doctor (usually requiring a biopsy) before doing so, which is something I strongly disagree with. You already know from the blood work that gluten is causing problems. The fact that your son's mouth sores have already disappeared is likely corroboration of dietary response.

    Continuing to feed him gluten so that a biopsy will show what you already know--that he shouldn't eat gluten--is rather like abuse, because it will cause unnecessary damage.

    Besides, if there are any continuing issues that do not resolve on a gluten-free diet--particularly intestinal issues--you can always have a biopsy done at that point, to see what might be going on.

    No, being in the same size jeans for 3 years is not normal for a tween or early teenager, unless you were rolling them up big-time for the last few years! It seems to me that your pediatrician should have caught a slowing down of growth on his growth charts--not necessarily for weight, if his current weight is within normal, but certainly for height.

    If your son has fallen off his growth curve, why hasn't the pediatrician noticed this? Or did he notice it, and was that why your son's blood was tested for celiac? 3 years is an awfully long time for a child to not grow.

    Also, some medications can interfere with growth, particularly ADD/ADHD meds and various psych meds. Is your son on any of those? If so, they should not be stopped suddenly,but weaned from, gradually. Most psychiatrists are unaware that celiac disease/gluten intolerance can disrupt brain function, resulting in diagnoses of ADD, ADHD, oppositional defiance disorder, bipolar disorder, depression, etc, and that removing gluten from the diet can end the symptoms entirely.

    Many celiacs need to eliminate all dairy products as well, until their intestines have healed. Some do have a lifelong sensitivity or allergy to dairy as well as celiac, but many are able to add it back in to their diets after the gluten damage has healed. That is something you may already know, but if not, you may want to consider removing dairy if his symptoms don't all resolve within a few weeks.

    Best of luck to you, your son, and your husband, and may continued health and growth bless your son!


  18. I will be traveling for work in Weisbaden, Hamburg, Vilnius, Vienna, Lucerne, London, Paris, Bonne, and Berlin.

    I've been to London and Vienna with no problems, so I think I'll be okay there.

    I'm a bit less confidant about finding gluten-free in the other cities. I am traveling with a large group, mostly by bus and plane, with a couple of trains, which is where the worry comes in--it's very difficult to find something gluten-free on the go, and, of course, I have no way to keep anything chilled. I also will have very little time in each city to actually go find food.

    I usually travel with an emergency stash of instant rice, instant miso, trail mix, shelf-stable salmon or tuna, and dried fruit, but that gets awfully old after several days, and I don't think I can pack 3 weeks worth of meals into one suitcase anyway and still have room for a few changes of clothes!

    I would be very grateful for any suggestions from anyone who is already on the other side of the pond (I'm in the States).

    Thanks so much!

    F.


  19. We went through this with our middle child.

    We did get a second opinion, and I am so glad we did.

    The first dentist, like yours, told us that there were several cavities in the front teeth that needed to be addressed immediately or he would have severe problems with his secondary teeth, including more decay.

    The second dentist looked, said, "hmmm, I see a lot of discoloration here...but it's not soft, it's hard. That means it's actually NOT decay. Did you have either antibiotics or iron supplements during pregnancy?" (I had BOTH.)

    Apparently, those can both cause major discoloration that appears quite similar to decay.

    The second dentist (to whom we will always be grateful) also told us that even if it HAD been decay, his recommendation would be to leave it alone--front baby teeth are the first to fall out, and he said in his 30 years of experience, he had never seen any child with decay in the front teeth have the secondary teeth affected, with the exception of kids who chewed sugary gum, constantly snacked on sticky-sweet snacks, and drank soda pop, milk drinks, or fruit juice instead of the recommended water.

    What really makes me upset is that the first dentist KNEW that our older child had had some severe developmental issues following a major surgery. Although mortality rates for pediatric dental surgery are low, they do exist--there are cases every year where the child dies on the table, from the anesthesia.

    According to the second dentist, that first dentist should have known that this was not decay; yet she was willing to put our child's life at risk for either cosmetic reasons (best case scenario) or for her own bank account (worst case scenario).

    Our child's secondary teeth came in just fine. No problems whatsoever.

    When you think about it, we are completely at the mercy of whatever dentist we see, unless we get a second opinion. They can tell us that we need all kinds of complicated interventions: fillings, crowns, implants, etc., and we don't have the education (unless we are dentists ourselves) to question or argue.

    I still have 3 baby teeth myself. I decided to find a new dentist, after the one I'd been going to kept insisting that I needed to have them all pulled (I was having no problems with them) and implants put in instead.

    I thought I'd found one I liked--but then he told me that he had to pull one because it was clearly infected (I had absolutely no symptoms). I didn't let him pull it, and saw yet another dentist, who told me that it was just fine.

    I'm sure that dentists are all having a difficult time with the dental insurance companies, but that doesn't mean that they have the right to deceive like that.

    It's another case of consumer, beware.

    Please get a second, or if necessary, third opinion.


  20. Roy, to put it more simply, tinnitus is not necessarily a direct symptom of celiac disease (thought it CAN be), but is often directly caused by intestinal damage that was caused by celiac.

    It is important to note that with celiac disease, you can have intestinal DAMAGE without having noticeable intestinal SYMPTOMS.

    There are other causes of tinnitus, and some of us have had it caused by several unrelated problems occurring simultaneously.

    I saw a study posted on one of the Pernicious Anemia sites saying that, in that particular study of people with noise-induced hearing loss and tinnitus, 84% were found to be B12 deficient.

    I wonder what percentage of them would have turned out to have celiac disease.


  21. Yes, there can be a correlation.

    Celiacs tend to have nutritional deficiencies due to malabsorption, and vitamin B12 deficiency in particular can cause tinnitus, sporadic hearing loss, headaches, dizziness, etc.

    Those symptoms together, by the way, tend to be labeled as "Meniere's Disease," but if you look up some Meniere's support sites, there are always several threads on celiac, wheat allergy, etc. Meniere's Disease is not a true "Disease" but a syndrome--a collection of symptoms of unknown origan, which doctors insist on calling "Idiopathic," which is supposed to make it sound like a real, treatable-with-medication-disease, but literally means that they don't know what it is.

    Another risk factor for B12 deficiency is long-term use of acid blockers. GERD and reflux seem to be very common complaints amongst celiacs, and these days, you don't even need a prescription to take Prilosec, Zantac, etc, and those are very effective acid blockers--so effective, they block the acid that you NEED to properly absorb the B12 in your multivitamin.

    Vegetarians, especially vegans, are also considered to be at high risk for B12 deficiency, as leafy greens, while great sources of folic acid, which works with B12, have zero B12. Red meat is the best food source. However, I'm not saying that all vegans need to give up their diet, just that they need to be sure to take an adequate B12 supplement.

    If you have already been tested for B12 deficiency, be sure to ask for the results. In this country, they tell you that you are fine with serum B12 numbers between 200-1100, which is a huge range. But in Japan, they treat anything under 650 as B12 deficiency--and they have the lowest rate of Alzheimer's Disease in the world, and Alzheimer's just happens to be linked with B12 deficiency.

    Vitamin D deficiency has been in the news a lot lately. I have seen some discussion that it may be partially responsible for some peoples' celiac when triggered later in life. Kind of a vicious circle, as the celiac itself causes vitamin deficiency.