Re: Re: Newbie Intro

[Guest guest]

Oh My !

Your post is mind-boggling!

In December 2004 when I first started getting SO sick I had this gut feeling I was allergic to flour products, and then while hopping from doctor to doctor and got focused on other things and I totally forgot about my flour product concerns. I have never done any research on gluten until I got your email today. I have been on Adkins the last 4 weeks. Started going off about 4 days ago. 2 nights ago I began craving bread and went on a binge with buttered toast and unknown servings of Cream of Wheat with butter that night and all day yesterday and until I read your email this morning. Been bingeing on Coca Colas too. My ears have been itching, my throat sore, and the lymph nodes in my neck hurting. I started popping benadryl.

Last night I noticed my feet were so swollen that I could not see the veins in them. My ankles looked like elephant legs. I could not see my ankle bones. My soles of my feet are itching and my rectum is itching. I am remembering when this all started December 2004, I was itching all over all the time.

Your information is SO fascinating!

I just woke up from a long nap, but before I was searching through my paper files of all my lab work since 2005. I had to copy them all when I applied for SSDI so I erased all the pencil notes on had written, but I seem to remember one lab either being high or low that I looked up and it said something about that test being high or low as a result of malnutrition. My doctor at that time said my labs were good even though some labs were either high or low.

I guess my IgA and IgG are totals. Don't really know. The only research I did on them was to understand what IgA and IgG do because the one RA doctor told me I was probably born with those Igs low, and that all that could be done about it was to get Ig IV treatment and they do not always work and would cost thousands of dollars.

Other doctors will order labs of my Igs and the results are almost exactly the same, but no one ever says anything about them.

I feel so STUPID that I have not pushed the issues and researched more. I had thought I had been my own good health advocate, but looks like I was wrong. Some times we do not know what I ask or research.

I have never had my hormones checked.

I am sort of at a loss now. When I first started getting sick my asthma was TERRIBLE and I was going to doctor to doctor for help. I used to do my well-women at M D because my breasts are so messy and early in 2005 when I was there the doctor barely touched my arm and I flinched with pain. She asked me about what was going on and I told her how painful my body was and she told me to see a RA doctor. Had no idea what a RA doctor was at that time.

The first one I saw told me nothing was wrong with me even though most my tests he did were positive, but not strong positives. I kept getting sick and with body pain. Would go to the rural internist and he would send me to that RA doctor who would always ask me why I was there and told me go back to the internist. That went on forever it seems. Then I went to see the RA doctor in , Dr. Stein. He diagnosed me, by at one visit he told me I only had 7 minutes with him. As I asked "why" I realized I was taking up precious time. Then I went to Houston to see Dr. Rubin. Got tired of having to drive to Houston and saw Dr. Stein two more times. The last time in about January of this year.

I know this does not sound very good about me . . . but when I see the RA doctors and I am NOT feeling at my worst I seem to forget how horrible my worst is even though I write everything down. I feel like I have an inadequate visit then because I cannot really explain the pain and what I can and cannot do. The last couple of weeks I have felt beyond horrible, and this is the first time the pain is equal on both side of my body.

Anyway . . . I could go on and on . . . but after reading your email and everything making SO MUCH SENSE, I am wondering where I need to go from here. There was an allergist/immunologist I REALLY liked who helped get my breathing meds right. We were going to explore my immune system but she left the practice and I tried a new allergist/immunologist in who I hated. His walls were covered with information and when I asked him to better explain Mass Cells he told me he did not have the time to explain anything to me. I NEVER went back to him, and have pretty much, with the exception of seeing the RA doctor earlier this year, simply let the interest prescribe my drugs, and giving up on everything else because I figured I would never really feel any better.

With your information I am not so sure I should order the thyroid tests on my own and am wondering if I should try to find the allergist in the Houston area I liked so much. Her name was Dickens or Dickenson. Will have to go back through my records to find her name and then search for her.

I am SO sorry to be SO long winded. But MY GOSH, I am just overwhelmed with your information and it makes so much sense! But I need suggestion on where I should go from here. Should I go ahead and get the thyroid labs done, or see a specialist first? And what kind of specialist?

Thank you SO Much!

I look forward to hearing back from you.

Oh . . . we had another inch of rain while I napped and it is pouring out there again.

Maurene

"Sometimes the things that may or may not be true are the things a man needs to believe in the most. That people are basically good. That honor, virtue, and courage mean everything, that money and power mean nothing. That good always triumphs over evil. That true love never dies." - Hub McCann, Secondhand Lions.www.RockDoveRanch.comMaurene@...

[Guest guest]

Hi Maurene,I'm glad you found the information helpful - I've been working through these issues for 7+ years now and it took a while to put all these pieces of the puzzle together myself. It is unfortunate that very few doctors really understand the body as a whole system and also very few really understand alot of the more recent research associated with the autoimmune genes and triggers - they love to classify issues as " idiopathic " - meaning the cause is unknown rather than taking a scientific approach and searcher for a root cause. I'm an engineer and I work in R & D, so it was a natural thing for me to research all of this and try and logically correlate all the information. Very few doctors are actually good scientists - they are generally exceptional at memorizing that symptom x can be treated with drug y and they do an excellent job of staying inside the box in which they were trained in medical school.  Anyways, enough of that rant -  in short, I'm trying to say that you shouldn't short change your own efforts to search for the root causes of your issues.  The fact that you are here means that you are pro-active about your health and don't want to accept that these problems are " just the way you are " or that your body just needs anti-depressants, sleep pills and pain pills.

From what i can tell you've already figured out that gluten is an issue for you.  The cravings have to do with the fact that for some of us the gluten impacts the opiate receptor in our brains - there is a nerve connection (vagus nerve) from the gut to the brain.  So, the craving for gluten is really an addition. Before I went GF, I would absolutely crave breads - I remember restaurants more for whether or not they had good bread (Macaroni Grill), rolls (Spring Creek BBQ), biscuits (Cracker Barrel), etc. than anything else.  I could eat bagles (and I did some days) for each meal - blueberry for breakfast, veggie for lunch and dinner and then chocolate chip for dessert.  Dairy can also impact some of us in the same way.  I had the exact same reaction to gluten that you are noting - I would swell up like violet from Willy Wonka - within 24 hours, I would look like I was 4 months pregnant. Since you are motivated, you likely do not need to be tested for the gluten. However, staying strictly GF is really important and that can be difficult as it's hidden in a lot of processed foods - it can be used in the manufacturing process to prevent caking/sticking for example and not have to be declared as an ingredient, it's hidden in Rx and OTC medications and eating out is quite challenging due to the potential for cross contamination.  I have setup a separate Yahoo group for the celiac/gluten folks if you'd like to join that to get more information.  The information is in the files for this group under " Related Issues and diseases " : http://health.groups.yahoo.com/group/Texas_Thyroid_Groups/files/Related%20issues%20and%20diseases/

If you do want to get tested, you can get tested on your own through enterolab:  www.enterolab.comIt is a do-it-yourself stool test. You can be tested for malabsorption, which could be helpful and there is a gene test, as well as testing for allergies to dairy.

The RA is a very common problem for lyme folks and goes along with an autoimmune gene called DR4. Depending upon the complete haplotype (you get 2 autoimmune genes sets, each containing 2 or 3 specific genes), the DR4 gene can be associated with a predisposition to be made ill from exposure to just about any toxin - folks with this specific haplotype do not detoxify anything - the body just doesn't recognize the toxins and thus the patient ends up with severe inflammation. The toxins also damage the hypothalamus, which is what results in a cascade of hormonal imbalances. The hypothalamus produces a hormone called MSH that is like the mother of all hormones.  The hypothalamus tells  the pituitary to secret hormones and of course, it's the TSH that tells the thyroid to produce thyroid hormones.  And, it's not just the thyroid that's impacted. Here's a good overview of the role of the hypothalamus and pituitary:

http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/hypopit/index.html  One of the reasons doctors are so puzzled by us is that they are trained to treat end stage diseases -e.g., organ and gland failures.  They will often look at initial lab results (when they have the sense to test all the hormones) and are dumbfounded when it looks like, for example, that you have some sort of pituitary problem. They'll often start looking for tumors - when they don't find it in the pituitary, they'll look at the hypothalamus. Once they don't find anything, that's usually when you'll get the " well, you're just that way " speech. This is one of the reasons why endocrinologists are often a poor choice for us - it is rare that they are capable of thinking outside the box.  Since GPs typically deal with the body as a whole,  many of us do far better with Family practice doctors than specialists. Even the doctor that I was treated by for my mold issue started out as a country family practice doctor. It was only when he started seeing  a pattern of illness in his patients that correlated with exposure to biotoxins (pfisteria in the waterways in the Eastern shore of land), that he started putting together the pieces of the puzzle. His undergraduate degree was in microbiology and he graduated with honors.  It's usually only the cream of the crop and doctors who graduated near the top of their classes with undergrad degrees in very in depth scientific, math and/or research areas that are capable of really understanding the extent of our health issues (several of the best doctors I've worked with have undergrad degrees in chemical engineering). 

In my experience, allergy doctors have not been at all useful.  Their medical training is typically to detect immediate (IgE mediated - this is where the MAST cells come in) allergic reactions. Many of the reactions we have are delayed (e.g., IgG).  And, the gluten issue is not an allergic reaction per se, it's an autoimmune reaction that produces IgM (B cell mediated) or IgA (mucosal) antibodies.  Bacterial infections like lyme produce IgM antibodies in the acute stage and IgG in the chronic stage.  I spent $800 out of pocket for my older son before I understood all of this and was suspecting he had an issue with gluten and dairy.  The (idiot) allergy doc said that if my son had problems with wheat or dairy, his reactions would be overt. When I had him tested at enterolab (< half the price of the out of pocket allergy testing) he had incredibly high IgA antibodies to the gluten and dairy.

As far as mold reactions, there are 3 big issues that can be caused by mold:1) allergies or sensitivities - I had negative IgE tests for mold, but NAET and ART testing showed that I was allergic to every kind of mold.

2) Fungal infections - these can impact the lungs and contribute to asthma symptoms3) Toxin induced illnesses - the mycotoxins produced by the mold spores can be inhaled (they are of similar molecular size as water).  The toxins have an affinity for fat, thus our brains tend to be most impacted since our brain is 70+% fat.  The toxins can also be consumed in foods that tend to contain toxins such as aflatoxins (e.g., peanuts, corn, etc.).  The silly thing is that it's well known that consuming these toxins causes severe health impacts because it is common to put anti-fungals in animal feed

The latter problem is the least understood in particular since not everyone is impacted in the same way by exposure to these toxins due to genes. And, most doctors are clueless in that the impacts of mold are not necessary dose related - some folks can be severely impacted by small amounts of mold.  Research also shows that repeated exposures tend to be more acute. 

As far as the coca colas, sugar feeds all the bad critters in our bodies - Lyme and fungi LOVE sugar.  So, once these critters get more active, they produce more toxins - that may be why your lymph nodes were bothering you - they just got too congested with toxins. Again, since our brains are most impacted, our necks and shoulders can be the most painful.  Neck/shoulder pain that just won't go away is one of the first impacts I notice when I've got lyme.  The itching can be the toxins trying to get out (the gluten in one sense is a toxin to your body).  Our skin is our largest detox organ. 

So, back to the thyroid.  In my experience sticking with a GF diet and getting your hormones adequately treated can make a BIG difference in how you feel. That really got me to about 80% wellness - I attribute about 30% of that to the diet and 20% to the thyroid BUT that may be due to the order in which they were addressed.  I found the celiac correlation because the first lyme doctor I went to diagnosed me with peripheral neuropathy.  So, I had two known problems and the top hit when googling that and hypothyroid was celiac.  It wasn't until I got my thyroid adequately treated that I got my brain back enough and I started researching more in depth the genetic correlations with Lyme and that's when I came across the mold connection. 

As already mentioned, you can get your thyroid tested on your own. You can also order saliva tests on your own for all your other hormones using zrtlabs or diagnostechs.  I prefer the former. If you go through the canaryclub website you can get a good discount - Dr. Shames, author of " Feeling Fat, fuzzy or frazzled " started this website.  In my experience showing up at a new doctor's office with your labs in hand can really expedite treatment and it also helps screen the doctor. If the doc has issues with your having gotten the testing on your own, then they are not likely to appreciate a motivated and/or assertive patient.  It's also quite helpful to do the blood tests and saliva tests on the same day and doing repeat thyroid tests at the same time of day (often first thing in the morning) before taking any thyroid hormone tends to work well for many of us.  I leave my PCP with a lab slip for Quest so that I can get my labs done two weeks before my next appt so we're working with the most recent information.

Hang in there - it does get better!!! B.