Fiddle-Faddle

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.

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.

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."

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!

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.

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.

I've never refrigerated my gluten-free flours (which I buy in bulk), and they've been fine. I do store them in sealed hard plastic food containers (I bought mine at Sam's Club). That keeps creepie-crawlies and humidity out, and they also stack very nicely.

We buy Rudi's gluten-free bread at Costco! 2 packages for $7.89--we buy 8 loaves at a time! (4 of us gluten-free in this family!)

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.

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.

There are support forums about the question of ablation vs. hysterectomy; here is just one: http://ehealthforum.com/health/topic15102.html#b

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 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.

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 :

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...

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