A long road to discovery!

Lizard · Joined: 28 Jul 2005 Posts: 5

Greetings all.

First of all, Al, thank you for all the informative posts ... I've been reading with interest, and confirming what I feel I already know.

Sorry this got to be so long ... my grandkids love my long stories, but i know adults have a shorter attention span Smile

I am new to this BB, and just want to share my experience in the past ... year or so, mainly the past 3 months.

I'll be 50 in 7 months, I guess this is what they call midlife crisis Razz

About a year ago, I had to take penicillin for something and broke out in sweats and a horrible rash that itched like I was laying on an ant pile.
Needless to say, I deducted I had a penicillin allergy.... I stopped taking it, and got better on my own.

3 months ago, I was put on Lopid for extremely high triglycerides. Within a day I broke out in a rash that looked like ringworm, except that it was symmetrical in appearance... on both sides of the neck, on both sides of the rib cage, and in both arm pits. I stopped taking the Lopid, the rash halted, but would not heal. Doc prescribed ringworm cream and I applied it liberally - to no avail. Since the rash appeared within less than a day after taking Lopid, he said he did not think the rash was related to it.... (?)

Two weeks later we went on vacation in the southwest, it was hotter than Hades, and all I ate was fruits, joghurt, salads - and my rash healed a lot.

Came back home, ten days later, almost healed, ate a tuna sandwich and within 1/2 a day had "ringworm" all over my belly, armpits, neck and forehead - symmetrically.

I am smart when the brain fog lifts, and started testing myself. First I ate tuna - no reaction, then I ate toast, and BOY the ant pile feeling was back, and the rash spread to my shins and knee bends....

AHA! Wheat allergy - I thought... so I cut out all wheat, and the next morning ate a bowl of joghurt, sprinkled with oatmeal and mixed nuts...

YOW! ... the "ants" turned into fire ants and "mosquito bites," I was itching so bad, I started crying, tears just rolling down my cheek.... Grain allergy??

Then, I turned to the internet.... looked up rashes - found my "ringworm" as some derma-something, and found the word Celiac ... so I looked it up and VOILA! ... a whole picture of mysterious symptoms all of a sudden layed out and fitting like pieces of a puzzle:
Fatigue, irritability, (very mild) depression, rheumatoid arthritis, migraines, brain fog, rash, nausea, diarrhea, constipation, bone aches (that's another story!), cramps, cold intolerance, tingling, muscle spasms and a whole other gamut of symptoms.

I cut out everything that was grain related .. but did not realize that food coloring, and MSG and other little food helpers were also poison. So I went to eat a chicken salad at a fast food chain that shows two arches Shocked

and instead of grilled chicken they gave me breaded chicken... I took off the breading, which left me with hardly any chicken, and applied the Newman's ranch dressing.

THAT IS A NO NO! I itched so bad, I broke out in my rash, got light headed, felt nauseated, got stomach cramps ... so I took an over the counter antihystamine (storebrand, nothing fancy - i am cheap!) for the itching and I wanted to crawl into a hole and disappear... the antihystamine contained YEAST, i was in tears again, and the rash spread all the way to my back - like chicken pox - ITCHY!

Short story long .. I can't take most vitamines, nor pills, have to eat fresh food only that *I* prepare, and have lost 20 lbs in 2 months. Laughing

My brain is less foggy, I have instant symptoms after eating remotely gluten-containing substances, and the weight keeps coming off at a pound every two to three days.... THAT is ideal!! Smile

Now I am starting to miss a slice of toast with "I can't believe it's not butter" and jelly, so I spoon a bit of butter and jelly, and eat it without the toast Smile

I am still trying to figure out a lot, and will get allergy tested next month, because my doc thinks it's "only" an allergy ...
I really don't care if I am labelled to have CD or not ... I will eat gluten free probably for the rest of my life and be fine with it.

Now I just have to learn more...

Oh, and my cholesterol and triglycerides dropped by 1/2 within 3 months also!!! Naturally back to normal.
_________________
"The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep." Robert Frost

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Hi Lizard (hehehe great name!!)

Welcome to the board! Glad you found us Smile

Thanks for the kind words! All I can say is...I try. I just want people know about what might be causing their problems.

Thanks for sharing your story. We're not too worried about lengthy stories around here Smile

. Do you think you could post it in Our Paths to Gluten Free-dom thread too? (You can copy and paste it - no need to retype it) THANKS!!! It'll be nice to keep all of our stories together.

Sounds like a good case of DH too! Have you taken a look in the Dermatitis Herpetiformis forum?

I too started doing the "self testing" LOL!! The brain fog was scary to me. It's funny you mention mosquito bites & fire ants. I had what I called "bee stings" all over. I did not have a rash nor did I itch, but I had all sorts of neuro stuff going on. I still do, but several things have disappeared.

Are you sensitive to yeast or were you just reacting to (possible) gluten in the meds? I have a friend that is yeast sensitive...although she does not itch.

Good luck in your GF Journey!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Lizard · Joined: 28 Jul 2005 Posts: 5

Well, you know, Al ... I do not care if it is yeast or gluten ... I am SURE ENOUGH not going through the testing phases again!!! LOL

Bee stings - I would not know since I haven't had any of those for the past 43 years, and don't remember what that one felt like... but you are probably right about that, too.

The dermatitis .... I am terrible at medical names, or any professional terminology - brain fog syndrome! ... yeah, that's what I deducted it may have been... sure looked like it a lot.

I was really upset when all this started and I had no clue what was going on, but now, that I have a clue, I really feel empowered. I can CONTROL it!!! I can take charge, and that's all I need to deal with things. Only what is out of my control is still a cause for anxiety. Smile

- Control freak - NO!!! not ME! Smile

BTW Lizard is my real nick name... given to me by my best friend, and it stuck - so now I collect lizards, photograph lizards, and protect geckos around my house from my "pesky" dogs Smile

As long as you can see the bright red wheelbarrow, glistening after the rain, and the white chickens ... the chicken poop seems half as bad Smile

_________________
"The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep." Robert Frost

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Hi Lizard,

Thanks for posting your story in the other thread.

Have you had any medical tests run for CD or DH? Blood tests...skin biopsies? Since you've read enough out here...you probably know that if you want to get blood tests done, you would need to be consuming gluten for it to be accurate. For many - getting an offical diagnosis is not a big deal - for others - it is. It sounds like it's not for you! Good for you. It took me awhile to get over wanting that piece of paper that says "You can't have gluten".

Take care
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Guest · Posted: Fri Jul 29, 2005 8:45 am Post subject:

Na, Al, that's okay - I've my share of tests and blood tests in the past years to be able to say "no" to an official GF label Smile

My wonderful doc did tell me at my last visit, though that a very good physician got lost in me ... so I can maybe say: "Physician, heal thyself."

Thanks, Al, for the attention you give us. That alone is worth a lot!