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hi. i was diagnosed with fibro in 1996. i have had good results with joint and muscle pain management with magnesium and malic acid. the magnesium amount varies....right now i am on 2000mg, split during the day, per day. i take 1200mg of malic acid. i use vitacost.com for my vitamins. i also take b12 injections, self-injections. 1000mcg per day, in the evening. this pretty much cured my raynaud's phenomena. if you don't already, it may be helpful to see a doc that specializes in fibro, not a doc that just sees patients that have fibro. good luck.

Thanks all. I have a friend who was seen at a "major medical center" and was told he couldn't have celiac disease because he did not have the HLA-DQ2 and 8 markers. They wouldn't do the biopsy because of this. Note that their website site states specifically that if you dont' have these markers you can't have celiac disease.

Does anyone have a link to a good article, or articles, that I can pass along to my friend so he will continue to pursue getting answers instead of giving up and "living with" his problems?

I am reading more and more statements by different medical colleges and universities, as well as medical professional groups that a negative HLQ-DQ2 and HLA-DQ8 test results means that you cannot have celiac disease. I am so very concerned that that very small, rare, subset of people that do have celiac diseasel but do not have these genetic markers will not be diagnosed. Can anyone else weigh in on this? Thanks.

Hi. I live in Wisconsin and would recommend going to Froedtert & Medical College of Wisconsin. The gastro dept. will require you to send or fax in the most recent medical records. They then match up the gastro doc to the records so you get the best suited doc.

I have not yet been, my appointment is the end of July, but I have a number of other docs at Froedtert & MCW and have been quite pleased.

Good luck.

if docs have CBC blood tests, checked your thyroid (TSH, free T4, free T3) and those are normal, you might want to ask to be tested for leaky gut syndrome (intestinal permeability). People who have gluten-intolerant, and find they are having more food allergies, might instead have an autoimmune reaction to food particles leaking through your intestine into your body. good luck

First, don't stress. Pick out a list of foods that you know is "safe", like ham, turkey (check the injections on both), potatos, nice veggies, some fruit....or fruit for dessert. YOu could get rolls for the non gluten-free eaters, a nice thing to do.

Don't do this meal thing twice. Do your best and anyone that sneers or complains can sit out on the porch.

i'm wondering if anyone else has a gut (haha) feeling that doctors often diagnose someone with IBS in order to take the easy way out. in other words, rather than really working with the patient to see what is really wrong (i.e. celiac, food allergies, etc.), they use IBS as a catchall diagnosis. i was diagnosed with IBS many many years ago, and now gluten-free and working on food allergy diagnoses, my IBS symptoms are gone.

you could certainly be reacting to something in the paint fumes, a chemical reaction. this makes even more sense if you have problems walking down the cleaning products aisle at store...makes you feel ill because of the smells.

hi. i was going through alot of what you are currently going through. finally, my brain made a connection. i would eat gluten-free stuff that my celiac friends had no problem with, but it caused a gluten like reaction for me. started me thinking perhaps i had other food allergies.

so, i went on a food elimination diet. no dairy, gluten (obviously!), eggs, fruit that you eat more than once a week, chocolate, sugar. eat only food that is in it's natural state, no preservatives. for me, at 3 days on this diet, i was completely cured of my rashes, itching, horribly painful stomach, running nose and watery/itchy eyes.

i'm adding in food slowly (pretty much screwed up the first weeks, but now i'm doing it right). so far, bad reaction to eggs. dairy is fine (thank goodness). chocolate is a problem (ate chocolate without soy lecithan - lindt 70% cocoa is one that you can usually find pretty easy). going to try apples next, i think.

it is a slow process, but well worth it.

Lisa, I have been gluten-free since April of 2007 and was doing great. Then, the beginning of this year, all my gastritis, ibs etc. symptoms came back, horribly horribly. I sat down and recognized I was getting these symptoms and others even when eating gluten-free food, and began to wonder if I had problems with other foods. I've been on an elimination diet for a month. Within the first three days, ALL my stomach pain was gone, as well as my watery/itchy eyes and runny nose. I've been adding food in slowly. Good on dairy (yeah!), but allergic to chocolate, eggs, so far. Chocolate?

Hi, I'm new around here, so I'm learning alot. I have endometriosis and had a surprising horrible flare-up the end of last year. I went gluten-free in April of last year. One thing to consider, too, is food allergies. I have been on an elimination diet for about a month, and have already found that I am allergic to chocolate, eggs and something in beef broth. Way different than my gluten intolerance.

Hi. I had Cushing's Disease, pituitary tumor, surgery in 1995. Your doctor needs to remember that there is cyclical Cushings, which means that the cortisol levels are not high constantly, they cycle up and down. Good endos will do multiple 24 hour urine tests, morning and evening blood cortisol tests and daytime and during the night saliva tests. There are others to do also, of course, but these are the easiest beginning points. Note that you could also have Cushings due to taking the prednisone. The symptoms are just as bad as Cushings by a tumor, and the withdrawal can be just as difficult. Good luck with your doc on Monday.

your current son's doc has a screw loose. probably more than one. i have had this happen myself, when i've questioned a doc about lab results....they tend to try and back themselves up, even if they know they're wrong. i had a lab done, with an age-sensitive range. the test came back, and i was "normal." upon reading closer, i saw they had used a range for someone born in 1932, not my age. when i called the endo about this and pointed that with my correct range for my age, i was actually well below normal. he said, and i quote, "well, it's not that bad." he HAD to support his original position, right or wrong. needless to say i never went to that endo again.

YES, to going to the new doc and as soon as possible. trends in labs are an important thing, and you are right on target with staying on top of this all. good for you in challenging the doc you have now.

Hi....The 24 hour urine is a good test. If it is not positive, the test should be repeated a few times over the next 2 months. Also, an 8 a.m. and an 8 p.m. blood cortisol test can be done to see how the cortisol level varies from the a.m. to the evening. ideally, it should start out a a normal, high, level, and by 8 p.m. should have dropped down. also, salivia cortisol tests are good ones, as they can be done at home. for this, a midnight test is a good one, because for normal people, that would be very low.

at least the endo has ordered this test, which is a start. your son's lack of urination is a puzzler. best of luck with this all...

Hi...another thought. Has your son been tested for Cushing's Disease? The rapid weight gain, and the drastic changes back and forth in facial features are signs of pediatric Cushings (I know a little bit about this, because I had adult Cushings, caused by a pituitary tumor).

The changes in features, if Cushings, can be caused by cyclical Cushings. Tough to "catch" with a diagnosis. If your endo pooh-poohs this, you need to find a better endo.

The leg pain and night sweats are also associated with Cushings. But the great weight gain is a real key, here. Get an appointment immediately with your endo. Take along a male adult to the appointment. It sucks, but many doctors still react more thoroughly and completely to a male than they do to a female. If the endo blows you off, use a search engine for Cushing's Endocrinologist and see what the different sites have to offer for you.

Many doctors think Cushing's is too rare to think they would ever see a patient with it.

And, taking pictures of your son's face, as it changes from day to day, is a GREAT GREAT idea. Date stamp the pics if possible, and take those in to the appointment. A doctor cannot ignore (they still do, so be prepared) this type of evidence.

Good luck!!!!

Hi, I'm new here, but am panypopituitary and have been dealing with hypothyroidism for many years. Check the American Association of Clinical Endocrinologists website; they have a statement regarding what the range of TSH should be. The vast majority of labs still have 5.0, or thereabouts, as the upper end. AACE says it should be 3.0, or so, and more testing when TSH is over 2.5. Having said that, TSH only is a picture of the communication between the pituitary and thryoid. It does not tell you what is released by the thryoid into the body, or what the body converts. T4 (and a small amount of T3) is released by the thyroid. T4 is inactive and is converted into active T3 in the body. Both free T4 and free T3 should be tested. That will tell you what the thyroid is producing, and how well it is being converted to T3. Also, check your son's morning temperature. Before he gets out of bed and starts moving. A low temperature can be indicative of hypothyroidism. This is too crucial to stay with a doc that won't listen. Gather your info, try one more time with the doc, and if he still blows you off, you need a new, good doc. Good luck!