tiredofdoctors

Rachel -- that was Funny!

Thanks for the advice, Heather. I'll try upping my calories -- I mostly have smoothies 1) they're easy and 2)I don't feel like eating. I'll try eating fruits & veggies and increase the calories -- my neuro doc wants me to swim to see if it will help increase some of the cerebellar coordination -- maybe that will help with weight loss, as well. Thanks for the advice -- I'll let you know how it goes! . . . . Lynne

I had what appears to be a DH reaction to a L'oreal product. Neutrogena has a long list of gluten-free products -- their newest microdermabrasion system contains LOTS of wheat, though. With regard to Bare Escentuals, I use their make-up; however, their skin revver-upper contains oat derivative. I've written to several companies -- neutrogena gave me their "safe" list, and Almay would give me information on specific products, not just a blanket list. All of the Estee Lauder companies (Lauder, Clinique, Bobbie Brown, Mac, Prescriptives, L'oreal and Jane) will not state that their products are gluten-free because they do not ask their materials providers if their products contain gluten. Long answer to a short question. Sorry

Okay, guys, so what can we do about this?????!!!! I eat around 900 - 1000 calories per day, and I'm STILL gaining weight. Has anyone seen a nutritionist who gave them any good information?

Unfortunately, I'm with you on this one. I had Hashimoto's Thyroiditis. I had an enlarged thyroid which had wrapped around the side of my neck behind my trachea and had also grown down under my breastbone. I had it removed because it had areas of hemorrhage -- a potential for the development of thyroid cancer. When I was first diagnosed with Gluten Ataxia, the neurologist said that I should have had my thyroid removed three years prior -- evidently, the autoimmune "watershed" is very prevalent in gluten intolerance.

I wrote a scathing note to both the publisher and agent. I then sent a copy it to KatiUsa's e-mail -- I really stink at the internet, but know how to cut & paste to make a new message. I'm hoping she will post it so that you can read it. It is brutally honest, but to the point.

Thanks for the help -- I'm going back to the neuro on Monday, and I'll be able to tell him of my (and your) experiences. It helps me be much more clear with him, because, up until now, he hasn't had anyone whose ataxia has progressed to this extent (largely because I was undiagnosed for a LONG time), and he hasn't treated anyone with DH. He was the first MD who said "I think this is Celiac-related" -- he has taken an interest in treating it, and now has two additional patients who have Gluten Ataxia without having Celiac.

Thanks for the input. As for salicylates, I've used them for years with no apparent trouble (Neutrogena products produce NO reaction). My neurologist (I have gluten ataxia vs celiac, but my antigliadin levels were "outrageously high" previously) has questioned whether my facial "rash" (kind of blistery around my hairline & cheeks -- burns & itches, but is not horrible by any stretch) is DH. He has even thought of performing a biopsy. I was previously diagnosed with psoriatic arthritis -- but the dermatologist said that he thought I had "sebo-psoriasis", because it bleeds -- all the MD's question that one. Maybe thet reaction was just one of the components in the stuff other than gluten. I think I'm just getting freaky over gluten now!

Hi Jen! Haven't looked at milk as the culprit. Haven't had a milk allergy before, maybe need to explore it with food challenges, then testing. Thanks for the idea. I am a "dairy gal." As far as the neuro aspects, it's being explored ad nauseum, quite frankly. I'm really getting tired of all the tests, but still really need ideas -- what's a girl to do, huh?

Okay, guys -- I have a question and need your help. I have been completely gluten-free (including soaps, shampoos, etc.), now for 19 weeks. I used "Olay Regenerist" microdermabrasion & peel two nights ago. The next morning, I had those familiar bumps all around my hairline and face that itch and burn -- to the extent that both my mother & daughter saw them and mentioned them. Can you get a gluten reaction from just APPLYING gluten-containing products to your skin?? Just curious -- it seemed a little suspicious. Thanks for your help . . . . Lynne

From what I have read and been told, antibodies can develop and escalate at any time, and at any rate. My initial antigliadin antibodies were high, but follow-up testing only three months later found them through the roof. I haven't been genetically tested yet (that's next) -- because I'm not celiac, only gluten ataxia. The anti-transglutaminase and antiendomysial cell antibodies were negative as well as my small intestine biopsy. I do want to know if I show or carry any of the genes (and there are quite a few), because I have kids who are 19 and 23. I want to know whether they need to be genetically tested and also tested for antibodies.

You may have had a "low" number of antibodies (I'm presuming they were antigliadin) during your first testing -- of course, your body may have just begun to produce them. The more you ingest gluten, the more antibodies to it your body will produce. I would suggest to your sister to monitor symptoms, but ultimately, I would encourage her to at minimum have her antigliadin antibodies tested. When you start talking "genetic testing", for some reason, people get freaked out!

Let's see -- 2 Rheumatologists, a Primary Care Physician, one opthmalogist, two neurologists, then finally the psychiatrist that does my ADHD meds referred me to her husband -- a vitreoretinal surgeon -- who referred me to the GI doc. He immediately did bloodwork and set me up for an endoscope and colonoscopy. I guess that makes it nine physicians total! Kind of makes you wonder, huh?

Not to be grose, but I feel that I am the queen of constipation. I take Zelnorm 6 mg per day, colace (2 in pm at bedtime), and eat about 12 prunes each day, not to mention salads, fresh fruits and veggies and adding flax seed to everything I eat. Still, I only "produce" about once every 10 days. Because I have had IBS in the past -- but it was the don't go 3 days, then diarrhea for 3 days type -- then I told the GI doc who did my bloodtesting and biopsy about the change (it was at 6 months when I told him) (BTW: I'm celiac negative, but have gluten ataxia) -- he gave me the Zelnorm. I thought I had not noticed a difference and was complaining about that fact to my husband. Then, I ran out of my prescription and didn't refill it. I found that it did make a small difference (2-3 days less). The neuro doc is afraid it is because of decreased peristalsis in the intestines due to the neurological damage -- still have to find out about that. Have tried Metamucil, Citrucel and psyllium -- mostly made me bloated with gas! -- but still haven't found a good "remedy". Still going to stick with the Zelnorm, though -- something is better than nothing.

I am so sorry that you are receiving that type of abuse from your family. It is unwarranted, mean-spirited, and downright scary that they would consider that endangering your health is funny. I have been very lucky that my family has been highly supportive -- even my in-laws. My house, of course, is completely gluten-free -- no BROW anywhere to be found -- my husband and I are pleased with the options we have found. My mother fixes my food first --then stores in the refrigerator in special containers prior to a dinner when we go over to her house. My mother-in-law, however, has not gotten the concept of gluten-free. She thinks that because she makes a different gravy (with cornstarch), that it doesn't matter that she "sprinkles" flour throughout all the other dishes she is making. My husband is going to have an educational talk with her -- she is a sweetheart, so I feel secure that she will take it in the spirit offered.

As I have read the responses, I have found that persons from my generation (I'm 43) are particularly outraged and are encouraging you to speak up. From my perspective, I think that when your relatives pull a stunt like eating bread then kissing you, I would ask them, "what is it about potentially endangering my health that you find so amusing? Please help me with it, so that I may share the joke, as well. Right now, I just feel scared that I'll get sick again, and I don't find that very funny." Or another, which I received from a therapist whom I respect greatly: "I'm sorry. I really need to apologize to you. (at that point, they will all be quiet, because they are receiving an APOLOGY) I must have mistakingly given you the impression that it is O.K. to abuse me, and it isn't. I'm very sorry that I made you think that. Please accept my apology and know that for sure, it is NOT O.K. for you to abuse me with what you consider "jokes", and that if it means that I have to choose not to be with you, I suppose that must be the consequences." It's hard to say, but WOW -- WHAT FREEDOM WHEN YOU DO!

My heart goes out to you. It's hard enough coping with this stupid disease as it is. To have to endure that type of behavior launched toward you is gut-wrenching to even read -- I can't imagine experiencing it. My prayers are with you. Please stay strong . . . . Lynne

If you have antigliadin antibodies and antiperkinje cells, not only do they cause destruction of the perkinje cells in the cerebellum of your brain, but they can also cause destruction of the perkinje cells in your retinas -- causing a whole host of problems. (I have double vision in the left eye, have started going color blind and night blind at 43). Amazing what that nasty gluten does, huh?

Great paper! Thanks for taking up for us "non-celiacs" (as the medical world calls us) and enlightening more folks outside of the Celiac world to Gluten Ataxia! . . . . Lynne

I'm German and English on paternal side, {English & Irish} and German on maternal side.

I do the smoothie thing, too, but since I'm not casein intolerant mine are made a little differently. Also, some of the soy milks contain gluten, so you have to be really careful. I use a large carton of plain yogurt, add a powdered combination of Milk & Egg protein (in a large can at the store), ground flax seed, any kind of fruit that I want, then 1/8 - 1/4 cup of turbinado sugar (depending upon how sour the fruit is! -- I'm definintely NOT a "sour" person!). It makes an entire blender full, and I usually have a large glass for breakfast. It makes about 3 large smoothies. It's pretty good, and I don't get hungry at all.

Splenda made me REALLY sick. I checked the ingredients -- maltodextrin is one of them -- but it is supposed to be safe if it is made in the US. At any rate, once I stopped using it, and switched to Turbinado sugar (raw sugar -- it seems I don't need to use nearly as much as processed), I got MUCH better.

Hi Sheila -- I think "flukey" is a word, too! I was lucky to have a really great GI doc. I had had elevated antigliadin antibodies, so the neuro doc felt it was celiac. The GI doc said, do you want to just rule this out completely? I said "yes", so he said let's do the bloodwork today, and the endoscope (I also had some other problems) and colonoscopy on Wednesday. We'll get all the results we need. I was glad that I had it done. It doesn't mean that I don't have to be gluten-free -- it's destroying my brain -- but I do know that it's not celiac. I knew that I didn't have the vitamin/mineral deficiencies that celiacs have -- that was not the root of the problem. I'd still continue to monitor glucose levels -- I'd go to the extent of purchasing a meter (Walgreens has disposable ones that are relatively inexpensive) and do pre- and post-prandial tests. I'd correlate that with the dipstick tests, then take all to my primary care doc. Sounds really unusual, and if it happens again, someone needs to take a look at it. Good luck to you - - BTW -- the endoscope is nothing at all -- and they didn't sedate me enough -- I watched it on the monitor!

Hi Sheila -- I'm in the healthcare field, as well. I'm surprised that with a high urine glucose that your blood glucose was only 96. Do you have access to the blood test that tests previous extended blood glucose? Do you have excessive thirst, etc.? Did you have any ketones in your urine? Have you ever had episodes of hypoglycemia? BTW: Being in the healthcare field, you know you're not supposed to cheat. Ever.

I have been diagnosed with "Gluten Ataxia" but I have confirmed Non Celiac -- both by blood tests and by biopsy. I have now been diagnosed with MS -- although the neurologists are playing a tug of war with this one. What I do know is this -- because I have had elevated anti-gliadin antibodies, I will be gluten-free for life. I have been for 12 weeks now. I have not seen any improvement in my symptoms, but I have not seen any progression, either. That is what is most important at this time. In my reading, which has been kind of lengthy, I have certainly been given the impression that leading a gluten-free life markedly reduces the severity of symptoms of MS. I agree with the "leaky gut" theory of increasing inflammation -- it makes sense, particularly for people who have been on steroids. I hope that the "powers that be" start to decide that Gluten sensitivity, ataxia, or Celiac is far more common than is currently known and will decide to research it far more than they have previously (particularly in the US). Good luck with your journey. Lynne

Thanks for the info -- that site is pretty interesting. Lynne

I'm 43, and was finally diagnosed with ADHD at age 39. Sure explains a lot of those report cards. I thought neighborly meant that I was a good neighbor -- I didn't know that it meant I couldn't stay in my seat or keep my mouth shut Self-medicated at 31 when I started college -- 2 pots of coffee per day. I take Concerta now -- what I've found is that, since being gluten-free (4+ weeks now), my meds are working much better. My daughter is ADHD, and my son is ADD, but haven't started into the testing for either of them yet with regard to gluten intolerance. Will start with genetic testing for me in the upcoming weeks, then they will follow suit.

With regard to the introduction of meds early in childhood: my sister was ADHD, but was 7 years younger than me, when it was becoming more understood. She was placed on Ritalin temporarily, and has much less difficulty than I do. It has been explained to me that, if a child receives medication early, it can "jump-start" the reticular activating system -- the part of the brain from which it is believed that ADHD is generated. That is why some children, after a very short stint on meds, will be "cured". As an adult, it has been explained to me that the chances of me being "med-free" without symptoms are extremely low. My reticular activating system is pretty much set in stone. My daughter and son both took meds for approximately 6-9 months, and both are med-free and definitely symptom-reduced, but have developed coping mechanisms during that time that make their life very normal.

With regard to the school systems, my feeling is this: YOU know your child better than anyone. Period. While your children may be in school for "x" amount of hours, that is with a large group of other children, as well. You are the best person to make the decisions for your kids, and most of the time you are their only advocate. (I'm a PT, and prior to having to "retire", treated pediatrics). Don't let the school system jerk you around. Be a thorn in their side. It's the only way you'll get what's best for your child.

I'm so sorry that you're not getting the support you deserve in trying to investigate and define what is happening with regard to your health. I have been very lucky that my husband, kids, and in-laws have been very supportive with regard to my diagnosis of gluten intolerance and subsequent ataxia. My sister still wants to believe that it is "conversion disorder" -- a physical manifestation of a severe psychological stress -- and that it will magically disappear. She continues to talk about "when you're O.K. again". I finally told her that, despite what she thinks will happen, my two neurologists have said that their long-term goal for me is that I would be able to walk well with a walker, and possibly walk without an assistive device. I insisted to her that I will continue to be gluten-free for the rest of my life, regardless of WHAT the outcomes are, because I have anti-gliadin antibodies and anti-perkinje cell antibodies. I also have extended relatives who roll their eyes at me when I won't eat birthday cake or foods which I know are poison to me. Stick to your guns, knowing that you are doing what is right for you, and is healthiest for you, and smile sweetly and say "you don't say". There is a joke about us southerners with regard to that -- if you want to hear it, e-mail me at bodyworxinc@hotmail.com -- it's a tiny bit off-color, but really funny! In the meantime, I can tell you from experience that this site is a wealth of support and information -- there are some very intelligent people who offer their help selflessly. Talk about a safe place! Take care of you . . . . Lynne