New On All Accounts

[All-about-March]

Hello all! I have been perusing the forums annonymously for a few weeks now and have finally decided to join as an active member, hoping to benefit from what appears to be a very supportive community.

Not even sure where the beginning truly began for me, but was diagnosed circa 1986 with depression and any health complaint from that point on seems to have been attributed to that - always making me belive that I should have been diagnosed as a hypochondriac instead.

Many years of insane fatigue, muscle weakness and spasms, cluster migraines, bone and joint pain, tremors, heart palpitations, fainting (list does go on) thus brought about a diagnosis of "depression with generalised anxiety disorder". So, it was "all in my head", but with my body having physical reactions.

Approx. 8 months ago, family doc noticed something after going over my history and suggested that repeated blood result were to be of concern. Referral to hematologist. Underwent plethora of tests, one of which was anti-endomysial with positive result. Referral to gastroenterologist. Endoscopy and colonoscopy done June 12 /06 and his diagnosis of Celiac disease was made during the procedure. Referral to nutritionist who seemed as knowledgable as myself about celiac disease - given vague and even contradictory info and "good luck, call us if you need us". (gee, thanks!)

Officially gluten-free as of July 7/06 (my b-day was the 6th and I chose to have all of my "last" favourites that day...last piece of cake, last beer etc.) My biggest issue is the fact that I don't now, nor ever had any GI symptoms. Doc said this is good and bad - good b/c I don't have to endure the suffering of some nasty side effects from ingesting the wrong stuff, but bad b/c I won't ever be able to be aware of the accidental glutenings. This is where I really begin to flounder with this disease. After reading around the forum, I am now wondering just how careful do I have to be and is it for real?? Cooking utensils? Shampoo? Kissing boyfriend after he eats pizza? Needing my own toaster and own jar of peanut butter? I have already been accused by family members of "taking this thing WAY too far"...what is real and what is taking it too far??

I am still very much in the confused, angry, and sulky phase, and wanting to deny the whole thing, but I am following the diet, taking my supplements, trying to educate myself, and seeking the support of others .... all of which I hope is putting me on the path to achieving wellness.....

[CarlaB]

Welcome to the club no one really wanted to join!!! We have fun here though and have all been through the denial, anger, teasing for being too careful, etc. Here you will find people who can relate!

First, you are not taking it too far. All the stuff you mentioned needs to be gluten-free. My hubby eats gluten-free if we're out on a "date" so that he can kiss me whenever he wants. He usually brushes his teeth when he gets home for the day, too.

I'm reading a book I recommend your read, it gives a plan for getting your health back on track overall. You need to keep completely gluten-free, too, of course. This is what you said that makes me think the book is essential for you: Many years of insane fatigue, muscle weakness and spasms, cluster migraines, bone and joint pain, tremors, heart palpitations, fainting (list does go on) thus brought about a diagnosis of "depression with generalised anxiety disorder". So, it was "all in my head", but with my body having physical reactions. Every one of those symptoms is a sign that your adrenals could be fatigued, probably a result of years of inflammation due to undiagnosed celiac disease. The book is Tired of Being Tired by Jesse Lynn Hanley, M.D. You can also google adrenal fatigue and adrenal burnout.

[GFBetsy]

You know, your doctor saying that you will never be aware of accidental glutenings is wrong. My mom's main symptom after being glutened is irritability/anxiety. She starts bouncing her legs up and down and feeling "on edge". She felt that way all the time before going gluten-free, and it was several months after she went gluten free that she realized that those feelings were syptoms of ingesting gluten (for her, anyway). Give the diet your best for a couple of months, at least. I'll bet you'll find that a lot of those symptoms that were "all in your head" were actually all in your gut. My Dad says: "You know, your mom's a lot nicer now that she's not eating wheat." And she calmly agrees! (NOT the expected reaction to a statement of that kind!)

DO be careful. Get your own toaster and your own jar of peanut butter (tear the label off and write "STAY OUT!" on the outside of the jar). Toasters are relatively cheap, and you won't use anymore peanut butter by taking yours out of a clean jar. The problem is that few of the people you live with are going to jump right on board with you about this diet (at first). They won't remember that now they need to use a clean knife EVERY SINGLE TIME they take peanut butter out of the jar. They won't remember not to wipe the knife on their bread and then wipe exces peanut butter off of the knife on the edge of the jar. They just won't. At first. But give them a chance to see the positive changes that going gluten free has made in your "generalized anxiety disorder". They may come to the realization that the positive effects of going gluten free are important enough that they need to "get on board" with your dietary concerns.

By the way, another way to help them realize the importance of the diet is to point out to your family members (parents/siblings/children) that they have a greatly elevated risk of having celiac because one family member already has the disease. Encourage them to be tested. Probably at least one of them will have a positive test . . . and then you won't be the only one worrying about the non-cross-contaminated peanut butter jar!

Best Wishes!

[lorka150]

Hi there,

Just wanted to say welcome to the boards - you'll find it very helpful. I'm also from Ontario if you need help with sources for things. I can't really add anything already to the great advice you've gotten, but wanted to say hello!

[All-about-March]

Thanks for the welcome and the helpful hints!

I actually do live alone, so my concerns about sharing condiments (ie: peanut butter ) is only of concern when I stay with my out of town relatives. My own apartment is completely gluten free and when my boyfriend stays over, he eats gluten free....heck I think he may have even begun to enjoy the rice pasta! He is very supportive and is trying really hard! There, I am quite lucky.

I am aware of the familial tendencies of celiac disease. I don't have any children of my own to worry about and other family members just aren't receptive to my suggestion that they may also want to be tested. I am in the process of compiling some literature for them on this subject - esp. the part about lactose intolerance, since they have that already.

I am also confused on whether celiac disease is allergy, autoimmune disorder, intolerance, and what exactly is the difference between these. In my research, all these terms seem to be used interchangeably.

CarlaB : I may just get a copy of the book you recommend. This 'adrenal burnout' you mentioned....just wondering about some more tests I'm supposed to get done (procrastinating on) - one is a 24 hour urine for catecholomines (sp?) is this related to it?