tiredofdoctors

Okay, I see how it is. . . . ply me with trips to Sephora . . . see ya tomorrow!!!!!

Thank you SO much for starting this thread. I had no idea that sulfites were considered O.K. for organic produce. NOT good.

My mother is HIGHLY reactive to sulfites (I'm sorry that I didn't see the previous thread.) She starts with bloating in her lower abdomen, which then goes up to her upper abdomen. She literally has to hold her stomach while she walks, because she has so much inflammation in her colon that for her abdomen contents to move while she walks is very painful. Then, she begins vomiting for hours. Then follows the big D. This continues for DAYS. She found this out by not understanding why, each time her sister visits, she gets this . . . and then it dawned on her . . . her sister brings her dried apricots. She read the ingredients, and the sulfites were on there. She did a challenge (only once convinced her), and makes SURE that she doesn't consume sulfites.

My son, as a very small child -- 16 months old, began having migraine headaches. They followed a specific pattern: He would become very hyperactive (normally a very laid-back child), would then get very pale, want me to rock him, and within 2 minutes after settling down, would literally projectile vomit all over me. I was taking him to the pediatrician constantly. At 18 months, he weighed 22 pounds. At 22 months, he weighed 18 pounds . . . the pediatrician asked me if I was making him diet. DIET????? A 22 month old baby??? I told him that he was projectile vomiting 4-5 nights per week. He told me that it was "normal" for a child of his age to "spit up" still . . . . I was so upset, but at that time of my life, so passive. I did tell him that I was concerned about the weight loss and the fact that Brandon was 9 lb 13 oz when he was born. Now he was almost two years old, and was only 8 pounds heavier than he was when he was born . . . .Obviously we changed pediatricians.

After much testing, we were sent to a neurologist who pinpointed it immediately . . . Brandon began eating finger-foods at 14 months. That included those little sausage sticks, then cut up hot dogs and bologna. It was the sulfites and sulfates. I was so grateful that we were sent to this man. Oddly, he is in my neurologist's office now, and I saw him and was able to thank him again. His son is in there as well, and he told his son that MY son was one of his first patients . . .. funny that a brand-spanking new neurologist pegged Brandon's problem immediately.

I had no idea that the other thread had been going on, or I would have been researching and participating. I apologize to the mother of that poor baby who has been having so much trouble. I'm saying prayers for you . . . . [[[[hugs]]]] Lynne

Boy, howdy does it have an effect on the Central Nervous System! I have "Gluten Ataxia" -- the Perkinje cells in the cerebellum rely on gliosis for their nutrition . . . Unfortunately, one of the proteins on the Perkinje cells strongly resembles gliadin. The Antigliadin antibodies, in my case, have attacked these proteins. So it's as if I have small "shorts" in the electrical wiring throughout my cerebellum. I walk like the worst drunk you've EVER seen . . . in fact, my rheumatologist, neurologists and physical therapist (I'm also a PT), have all recommended that I use only my wheelchair, because the manner in which I walk, not to mention my falls, are taking a HUGE toll on my joints and spine. I also have MAJOR peripheral neuropathy. I'm to the point that, if I'm wearing shoes, I can't feel the ground beneath me -- only the shoes, and I fall MUCH more.

What's funny is that I should have known better . . . it was my secretary that pointed out to me how much I fall . . . before I had to close my office. She said that she waited for the "thud" in the room when I was treating someone . . . I just chalked it up to being "tired". I also didn't even THINK about the peripheral neuropathy when I stepped into the bathtub with no problem, but burned my butt every time!

There is a physician that was considered a quack 5 years ago for presenting this theory . . . five years later, no one's laughing at him anymore . . . I can''t remember his name -- I also have "word retrieval" difficulties because of the cerebellum . . . it controls a LOT more than we know . . . but he is in the UK.

Best of luck to you. I'll be sending good thoughts and prayers your way . . . If you want any additional info (because the people on this forum are probably SICK of hearing my story!), feel free to e-mail me at bodyworxinc@hotmail.com!

Lynne

Ain't it the truth?????

Hi Betty . . . did they remove any polyps? I had a couple of sore places where they removed polyps for about a week or so.

Now, for the gas issue . . . Okay, folks, remember I treated women's health, so I have some bizarre tips :

Get on all fours, bend your elbows, and keep your butt up in the air. The gas is lighter than the air, and will move -- ummmm -- upwards. Works like a charm.

I also have an intestinal massage self-treatment that I used to teach my pregnant patients . . . it simulates peristalsis in the intestines . . . . when I took the course on pregnancy, and we had to practice this on each other, the instructor informed us that "the first person to make their partner fart wins." Enough said.

I'm Finished . . . . . . . .

First, Moongirl, thanks for taking the time to check on Bath & Bodyworks and for posting their response. I love their stuff, and have really missed it. (Especially since they had that $5 sale a couple of weeks ago -- ouch!)

With regard to just listing them . . . I really DON'T know why they don't. My only theory is this: They don't monitor the products which they receive from other manufacturers. Case in Point -- if a supplier of the fragrance uses something with gluten to thicken their product, then they add it to their, say, bath gel, the gel contains gluten. If they say that it is gluten-free, and for whatever reason it gets tested and shows gluten in it, then it's a potential basis for a lawsuit.

Not asking their suppliers about the gluten status of their products is, at minimum, irresponsible. But to refuse to list their products as gluten-free in order to CYA is unethical and not acceptable.

Just a thought . . . not a GOOD one, but a thought.

I think you're on the right path. I'm negative for everything except antigliadin antibodies, which, according to my neuro doc, were "outrageously high". Played a number on my brain, let me tell ya. Good idea to get re-tested. They're finding more and more that Celiac doesn't necessarily mean just gut anymore . . . my neuro still says I have Celiac, even though the GI doc continues to tell him it's not CELIAC, it's GLUTEN INTOLERANCE . . . . semantics

I'm wondering if it has anything to do with Estrogen or Progesterone increase. When you're initially pregnant, you get a huge rush of progesterone . . . in order to sustain the embryo. That, combined with an increase in estrogen, causes the breast enlargement and tenderness. Noticed that myself, and I was using Estrogen cream. After going gluten-free, the estrogen cream gave me morning sickness! After stopping it completely, the morning sickness subsided. Still had breast enlargement and tenderness, though. Have to have my levels drawn within the next few weeks, then see my endocrinologist. I'll put that on my list of questions for her . . . she's fantastic, and loves quirky, challenging questions. (Thank goodness,because I feel that I provide her with WAY too many ) Will let you know what she says . . .

Hi Erica -- I'm so sorry you're having difficulties. I know that it's cold comfort, but you're not alone . . . all of us, at one time or another, have had difficulty with starting the diet, adapting to the cooking, worrying about family, cross contamination, and on and on and on . . . . I think that it's actually part of the process of fully accepting the disease. It sort of makes the reality "kick-in" a little stronger. Sometimes that's good, sometimes, it's devastating.

What I really want you to know is that, you have such a powerful resource with the people who are on this forum. I don't know what I would have done without them, early, mid and even now in my disease process. They are the most kind, compassionate, knowledgeable and generous people you will meet. I want you to know that you can vent anytime . . . I don't know that there's one of us who have been on here for awhile who hasn't vented at least oh, say, 10,000 times! Just kidding. But yes, I think we all have vented at least once. It's great when we're here for the good stuff, but just as importantly, please know that we're here for the bad stuff, too.

Take care of you.

Hugs,

Lynne

Jen, I'm almost GLAD we don't have one yet!

I have a copy of the delphi list . . . if you want it, just PM me, and I'll send it to your e-mail address.

Lynne

YES! I have "word-retrieval" dysfunction, according to my testing . . . at least I know now WHY I can't get the right words lately . . . it is SO frustrating.

Have you tried the tinted mineral veil? It's in the summer gift thing-y. NICE. I really like it! We only have Ulta here . . . and boy, is my husband glad. When we were in Mall of America, they had Sephora -- my husband was FRIGHTENED!!!!!

I'm sorry Jen . . . . . . .

One of the main differences in Rosacea vs. Lupus with regard to the facial rash is that Rosacea causes redness throughout the butterfly area, including the nasolabial folds. With lupus, the nasolabial folds remain white, hence TRULY looking like a butterfly. That's one way to alay some of your fears. Also, Rosacea reacts to alcohol the same -- its because it makes the blood vessels dilate. All it takes is one shot of tequila, and I look like my face is going to catch on fire! I've had more Lupus tests than any person I can imagine because of my face . . . but it's still negative. The rheumatologist continues to test, but each time says, I know that I'm testing, but I want to be sure. Your nasolabial folds are so RED, though. Dermatologist says Rosacea, too.

I had joint pains for quite some time, which is why they kept insisting that I had some sort of rheumatological disease . . . it was due to the Hashimoto's. Even though I was taking thyroid medication, because of the antibodies, my body was rejecting it, and I was not getting enough thyroid hormone to keep me free of the symptoms.

I would still keep a strong watch on the Lupus possibility. Some forms of lupus are very benign . . . you have minimal symptoms, minimal involvement throughout your body. Some, though, are bad babies . . . very wide-spread throughout your body, a lot of organ involvement, and much damage. For that reason, you should have a full Lupus panel completed -- if only to establish a "baseline", even if it's negative. They should do an ANA, an RA, a Sed Rate, Lupus panel, and Anti-Cardiolipid antibody tests. It wouldn't hurt to have a TSH, T3, T4 and thyroid antibody tests, as well.

Sorry to bombard you with TMI, but hope some of the info helps. Take care of you . . . . .

Hugs,

Lynne

Lisa, I don't know . . . I'll check with a friend of mine and see what her opinion is. She is pretty knowledgeable, a pharmacist, and might be able to shed some light on it. Will let you know what she says . . . . Hugs, Lynne

The only time I went to a Homeopathic doctor, I ended up with lupus-like symptoms from the medications she gave me. Stopped taking them, because I went to a PA who was very concerned. Did a challenge test 6 weeks later just to see if it was the homeopathic things that she gave me . . . came right back. Given my bad experience, I don't recommend it. Celiac is genetic . . . I agree, save your money.

Oh Vincent, I am so happy!!! He sounds like he is doing GREAT! We had that trouble with Ashley . . . I was fortunate that at 9 months, they caught that she wasn't making sounds that were "pre-talk" -- only pointing to everything, with no sounds. She had so many infections . . . I took her to the Ear Nose & Throat doctor, and he said that her hearing loss was so profound that she needed tubes immediately. He didn't do the permanent ones, but he did use Stainless Stell vs. just the plastic that they usually use. He said that they did a better job of keeping the ears drained, and they stayed in longer. They lasted until she was 3 1/2 . . . and she ended up doing really well verbally.

Kids catch up so quickly . . . . Tymber will be talking up a storm in no time! I am so glad. What a blessing . . .

Hugs to you BOTH,

Lynne

Hey Susie -- Just thought -- like mother, like daughter!!!!! Had to say it . . . . . Lynnie

And she passed the medical boards?????

You ought to send her Peter Greene's book, "Dangerous Grains". She probably wouldn't read it. Any physician that close-minded doesn't want to know, anyway.

I'd be very tempted to take your mother to another physician . . . one that is actually current on medical conditions. Good luck to you. I'll see if I can find any short articles which may shed some light her way . . .

I went through the whole MS thing, too. Had MRI after MRI . . . finally, they nailed that it was Perkinje cell damage in the cerebellum of my brain . . . my antigliadin antibodies were REALLY high for quite some time. Also have so many different mitigating diseases processes going that nailing a treatment plan was a pain in the butt! Think we're on our way, though . . . at least hope so . . . .

Sounds like you're on the right track . . . don't you hate it when you find stuff out like that AFTER you've had it for awhile . . . I always think: "The doctor should have known that . . . if it's common knowledge, then I expect them to have it memorized!!!"

I'm really glad it went well. It's never silly to worry about your child . . . no matter what. That's what mom's do best, somtimes!!!

Looks like 277 isn't good AT ALL. Funny, that's around what mine was when one doc said I was "fine". Hmmmmm.......

I have pernicious anemia, too . . . didn't want to scare her. I'm still not sure about my levels on the sublingual . . . am going to the endocrinologist to see how they are. May have to go back on injections, but hope not . . . I have a factor VIII deficiency, and so when I'm on the injections, my legs look like a kaleidoscope of different shades of bruising! I have neuropathy from all the brain diagnoses, no thyroid, so it's hard to tell from symptoms if it's working . . .

I have these symptoms, but I really don't have typical celiac . . . I DO know that Freeda vitamins are gluten-free, yeast free, everything-free(!) and they have a sublingual B12 -- I take it now. I used to do B12 injections. At one point, I had to give them to myself daily, but then they got the level to the point that I could go to weekly, etc., and now I can take the sublingual. You don't want to take any B12 supplements that you swallow whole . . . stomach acid pretty much destroys all available vitamin. When you take it sublingually (under your tongue), the mucous membranes absorb the vitamin directly (that's why they give you nitroglycerine under your tongue). I have been very happy with the Freeda vitamins I purchased . . . I got prenatal (although I'm not pregnant -- my daughter is getting married, I'm trying to grow my hair longer, and to satiate her insistance that prenatal vitamins work better, I got those!), CoQ10, and B12. Another funny thing about them -- they smell a LITTLE like vitamins, but they don't have that normal "icky" smell that regular vitamins do.

Glad you're going to find someone who listens . . . it really makes the whole process a LOT easier. It's scary enough as it is when all this bizarre stuff is going on with your body. Then, to have a doctor who acts as if he doesn't give a rat's fanny is just so disheartening. Good luck -- I'll be sending "find a good doctor vibes" your way!!!

Hugs,

Lynne