Update and Lab results

[Tanya Lynn]

Hello Everyone, I'm glad to be back home. I've been on a 10 day vacation up
to the western part of North Carolina to Charleston and Savannah. What a
beautiful part of the country!! I just had to laugh at the people up in Asheville, NC,
they just kept complaining of the heat and humidity. They obviously haven't
been to Texas!! Anyway, while on vacation I received my lab results from
Enterolabs and I was hoping for better results. I emailed Tex to have him explain
my results to me so I could understand them better, Tex is so wonderful.
It was a sad day that day.... Here are my results:

Fecal Anti-gliadin IgA 172 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 56 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 25 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 30 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0604
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6) Both of these genes
predispose to gluten sensitivity. Note that this is a double DQ1 combination,
usually connected with increased sensitivity, and more food intolerances.

I totally understand with JoAnn about her troubles with traveling. Mornings are
very bad for me and I would have to stay in the condo until about noon.
I couldn't leave the bathroom... My wonderful husband is so sweet, he never
complained at all, just said, "It's ok, we are on vacation" He's been so great
throughout this whole ordeal and will eat whatever I fix.

We decided to do the walking tour of Charleston and I had to duck out of
the tour to run to the nearest hotel to find a bathroom. I was so embarrassed
and upset that I can't get far from the bathroom, my MC controls my life.
It controlled my whole vacation, I wanted so badly to get up at sunrise and
walk down the beach and watch the sun rise, and I couldn't in fear of having
to go... We had to cut a Kayak tour in half because of my stomach...
What's so very usual is that before I had LC, when I would travel, I would
get so constipated that I was miserable. But, given what I know now, I would
rather be constipated than having D attacks!!

What JoAnn said is so true,"The social part is hard when you're with a group
and everyone seems to be able to eat whatever they want." We had to attend a
wedding and the night of the rehearsal dinner, I could only eat the pork
tenderloin grilled without any sauce, and there was absolutely nothing I could
eat at the wedding. Everything was forbidden. I was trying to deal with the fact that
I couldn't eat anything but when people start asking you questions, I just don't
even know what to say. My husband says that there is no way of explaining
what I go through, no one really understands unless they live with me.

I am so very thankful that I have found everyone here. I know everyone understands.

As far as my progress, I have been on Endocort for 2 months and have been
GF, DF for almost two months and SF for about 3 weeks and still having D
about 8'xs a day. It's a slow process for sure.

Hope everyone's doing well and I'm glad to be back home.

Tanya

I totally agree with Polly, that old bathroom anxiety, I have learned from using
really rough TP, that a pack of baby wipes are a necessity.

[Gabes-Apg]

Tanya

sorry the results were not what you wanted, and that the holiday was different due to MC.

Most days i am fine with others eating and then here and there there are days it really does get to me.

it takes courage to do a trip like that and deal with the anomolies that MC creates - so congrats to you for doing that!
you are blessed to have a husband who is caring and supportive.

IMO - times like this it is important to remind ourselves, it doesnt matter what any body else thinks. we dont have to justify ourselves to anyone else.

[Polly]

Hi there Tanya Lynn!

And welcome to the double DQ1 genetic club (dubious honor, hahaha). There are a few of us here in that boat, so we know how difficult it is to hear that news. The biggest issue is that we tend to have far more intolerances when we are "doubles" and usually take longer to go into remission. But I am living proof that it IS possible to go into remission, even with diet alone, and no longer show any evidence of MC on colon biopsy!

Given your multiple intolerances, you may find it easier to jump right to the paleo (caveman) diet. This diet consisits of meat, fowl, seafood, fruits/veggies, and nuts/seeds. It eliminates grains and dairy right off the bat, and may make it easier to go into remission sooner. For more info, check out Cordain's book on the "Paleo Diet". There is a lot of advice and support here for the paleo diet, too, so just yell if you'd like to learn more about it.

You are now on the path to health.....congrats! It DOES become easier, I promise, especially when you start to feel good once again. You certainly have chosen an appropro quote.......let us know if you need help making that "lemonade". LOL!

Love,

Polly

[JoAnn]

Hi Tanya, First, I admire you for going on a 10 day vacation and doing all the things you did! I wasn't brave enough to do that when I first found I had MC. In fact, I had to cancel a trip to Hawaii that broke my heart. One of these days, I'm going to get there. I know exactly how you feel about getting your test results. I felt like I was sensitive to everything and didn't know what to put in my mouth. I didn't see eggs on your list, so I guess you can still eat those. I miss eating eggs and some of my favorite Mexican dishes with cheese. I know it took me a while to absorb all the changes that MC brought into my life and I'm still adjusting. I think it's natural to grieve for awhile and then move on with your game plan. I traveled with my very compassionate, supportive husband and my sister and her husband. They are all very supportive, but sometimes I would watch them eat whatever they wanted and I felt so envious. On my better days, I look at it as a challenge and try to be creative with the foods I can eat and feel grateful that I can control my health with my diet. It is so crazy that I can eat a healthy, organic chicken and have a bad reaction, but if I eat some Spam from the can, I'm fine. I never even tried Spam until I got MC . Just know you are not alone and eventually you will get things figured out. This board is such a wonderful place to work through all your ups and downs and keep you going. It's slow going, but so worth it. Good luck on your journey to health and healing, JoAnn

[tex]

Hi Tanya,

Welcome back to Texas.

I hope that you'll be able to achieve remission, pretty soon.

At least the high temp was under a hundred today, for the first time in a long time.

Tex

[Tanya Lynn]

Gabes, Polly, JoAnn and Tex,

Thanks so much for all the support, I just don't know where
I would be if I hadn't found ya'll....

Polly, Thanks for the info about the diet. I would love to know
about your story, if it's somewhere on this site can you post
the link. Did you ever take Endocort at all? Or have you just
gone by the diet alone? How long did it take for you to get to
this point? Sorry for all the ?'s.... Oh, not to forget about Rusty,
how's he doing?

Tex, the weather today is hot but the humidity is gone,
at least for today.... Yeah!!!

I also saw a post on "Hair Loss" that I haven't had a chance to
read yet, but I am losing my hair at an alarming rate. It's
so scary....

Tanya

[Stanz]

Tanya,

I'm another double DQB1. I believe that both Polly and I have beaten this disease with diet alone. You appear to be suffering from more than one intolerance, and I'm sorry, but at least now you know and can deal with it. I had already been GF for 4 months when I was dx w/MC and am now nearly 13 mos. GF. I used L-Glutamine, probiotics and vitamins, as well as a fair amount of Lotrimin in the beginning. I'd had D for nearly 2 1/2 yrs and had it under control within less than 3 wks. Recently completely stopped taking what had become an ever smaller amt. of L-Glutamine and have had a few days of "almost" D, so now I'm taking a Tbsp. every day or two. So far so good.

Connie

[Linda in BC]

Hi Tanya:

I don't think I have welcomed you yet, so welcome! And we have the double DQ1 gene in common, also. I certainly do understand what you are going through. I have been GF, SF and Corn Free since June and DF for about 7 years, and am still reacting everyday. I am also trying a drug called LDN (Low Dose Naltrexone) without a lot of luck so far. Trying to figure out what in my diet is doing me in. It can take time for those of us with mulitple intolerances, but at least we know that others have found relief from this disease through diet and that surely we are on the right path!

Wishing you success in finding out what your intolerances are,
Linda