Old 09-11-2015, 04:48 PM #1 (permalink)
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Default Celiac Disease

I've hesitated about posting this just yet because I'm not sure that I know what to do with the thoughts and emotions that it's caused me.

At our last clinic appt, D r Bedlack told us that because of a recent ALS Untangled review on Celiac Disease, he is now testing everyone for it when they come in. I see there is an old story about a man with Celiac being misdiagnosed with ALS, and a fairly recent Isralie study indicates a possible connection. We learned halfway through Kansas that Matt's lab results indicate possible Celiac Disease; the only way for positive diagnosis is a biopsy of his lower intestine. He'll be having that done as soon as we can get it scheduled upon our return home.

Apparently, Celiac Disease can cause neurologic damage like ALS.

Here's where I've been trying to keep a real tight reign on my heart. I had about two hours of euphoria where I remembered what HOPE felt like.

Then I came back to earth. This is a VERY long shot and I don't want to have to experience having hope dashed, so I THINK I've filed it under the heading of "this could prove to be interesting".
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Old 09-11-2015, 05:02 PM #2 (permalink)
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Default Re: Celiac Disease

There is always room for HOPE...

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Old 09-11-2015, 05:15 PM #3 (permalink)
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Default Re: Celiac Disease

Please do keep us posted
Thought you might be interested in this
The diagnostic accuracy of serologic tests for celiac disease: a systematic review. - PubMed - NCBI
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Old 09-11-2015, 07:25 PM #4 (permalink)
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Default Re: Celiac Disease

Nuts,

He tested me for Celiac as well. My tests came back negative
I'll hope for you. I understand about false hope but hope is really all we have.

Vince
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Old 09-11-2015, 08:07 PM #5 (permalink)
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Default Re: Celiac Disease

Hope is such a double edged sword- lifting you up even while worried about being disappointed.
I am wishing you the absolute BEST possible result.
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Old 09-11-2015, 09:40 PM #6 (permalink)
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Default Re: Celiac Disease

I had the biopsy to test for Celiac very early in the diagnostic process. It was negative.

If you don't have a confirmed negative result, it is very much worth investigating (in my opinion)!

Here is to hoping for the best.

By the way, when you drive by Vail, be sure to wave

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Old 09-11-2015, 11:22 PM #7 (permalink)
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Thumbs down Re: Celiac Disease

Nuts you keep on hoping. We all need hope and we may get disappointed at times. I have a lot of feelings in a day anymore and the past week has been a huge struggle for me. Reality is sinking in and life is changing so fast. Hope is one of the feelings I have everyday. I call it my day dreaming time. We all need hope and if we can see a cure down the road, than hope will stay alive in all of us.
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Old 09-12-2015, 10:18 AM #8 (permalink)
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Default Re: Celiac Disease

I've been giving a lot of thought to the idea of hope for the past few days. You all are right--we need hope, in fact, I think we require it to go on. I think perhaps we change what we hope for in response to the realities of our situation.

I love Matt's perspective. He read enough about Celiac Disease to realize that it would mean he's not getting enough nutrients, so even if he has it but treating it doesn't mean no ALS, it would mean he'd get more nutrients and his body would handle the ride better. Interestingly, he's always had a very fast disgestive system. Doctors have been amazed at how quickly food works it's way through him. That's a real problem for his diabetes, as it means his system dumps sugar all at once also. Even if the results of the biopsy are negative, perhaps we will learn something else...

Me, I've switched hope to shorter term goals and to matters of comfort and his enjoyment now. Hope for a longer future together both elates and terrifies me, because I'm not sure I could accept the loss of that future all over. That's what I keep a reign on. Of course, I can't really quell it, so this will be an interesting loop on the rollercoaster we're all on. I have HUGE hope for treatment and cure, based on what's going on with research now. I also suspect that if science can crack this nut it will find help for a wide array of nuerological diseases.

Steve, we stopped for lunch in...is it West Vail? We had to let the brakes on the trailer cool; The one that is sticking wore the tread off part of a new tire. It's a good thing we have a spare. Here's hoping the shop we dropped it off at can fix it. What beautiful country you live in! I don't blame you for not wanting to move to a lower elevation.

Those of you who've had the biopsy--what did it entail? How invasive was it?

Becky
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Old 09-13-2015, 08:15 AM #9 (permalink)
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Default Re: Celiac Disease

hey becky, i know how ya feel about the 'HOPE' thing the up and down of it all but hey what else is there? expectations are my bumps in the road, i try hard not to have to high expectations in hopes not to be dashed down to hard. hey are you guys out there to hunt already? i wanted to tell matt that i am ready here in wv and have been seeing some real nice big bucks but season not in yet, hope they stick around. can't bow hunt any more and how do you pull back on the trigger my 308 has tight trigger maybe i need to take it and have it modified. have a great time out there! like to hear how it goes if ya fell like it and good luck with the tests. love ya chally
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Old 09-13-2015, 10:31 AM #10 (permalink)
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Default Re: Celiac Disease

Hi Chally! Yes, we are in CO and yesterday was Matt's first (evening) hunt. He has an elk tag but didn't see any. He did see about 20 bucks traveling in two herds within just a few minutes as they were leaving--he said it was an awesome sight (not a word he uses often).

ALS started in his legs and while his arms are affected, they aren't so weak yet that he can't pull the trigger. He uses a tripod for the gun since it is too heavy for him to hold, and he suggests you check into whether a crossbow is legal in WV. He's had a permit to use one for years because of shoulder injuries/surgerys.

I know you have the V6 also. I was delighted with the quick response from the company. I emailed Todd Libey and he got right back to me about the limit switch on the chair.

Becky
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Old 09-13-2015, 03:24 PM #11 (permalink)
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Default Re: Celiac Disease

About celiac, my doctor told me that early in his practice he had a lady present with symptoms of MS. This went on for quite some time. As it turned out, she had celiac disease. One of the first tests he gave me was for celiac. It may be a long shot, but it does happen. Best to rule it in, or out.
- Charlene
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Old 09-14-2015, 11:14 AM #12 (permalink)
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Default Re: Celiac Disease

I was also tested for Celiac but it was a blood test through Mayo Clinic. I actually had stomach pain and h-pylori which was found through an endoscopic exam. The Celiac test was negative but my primary at Mayo told me to stay away from gluten anyway. I feel better when I do. When I don't, I get stomach pain. I also try to eat as much organic food as I can. Since I have other health issues, it's been hard to balance what I eat with what I should eat.
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Old 09-14-2015, 01:57 PM #13 (permalink)
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Default Re: Celiac Disease

Steve takes digestive enzymes. In order for him to get enough calories in to maintain weight he eats less fruits and veggies and more carbs. This helps with bloat and gas.
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Old 09-28-2015, 10:40 AM #14 (permalink)
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Default Re: Celiac Disease

Well, I've tried to keep my hope in check, but it's just not possible. I'm fantasizing about curing my sweetie with nutrition and restoring him with stem cell transplants. I know I'm way ahead of things, and that the biopsy may come back negative, but I guess I'll just have to deal with disappointment all over again if the results are negative.

I'd love to put him on a healthy, gluetin free, diabetic friendly,diet anyway, but right now he's still eating for pleasure. He used to say some people ate to live and he lived to eat--how ironic will it be if eating is what's killing him.

The biopsy is scheduled for October 22. It will be along three weeks! Unfortunately, from what I've read he needs to continue eating gluetin in order to get an accurate result. I feel like I may be poisoning him with every bite. I want to purge the house now. ARGH!

We won't even talk about the diabetes. If this pans out I'm going to have to become a dietitian. LOL...most that I've spoken to in the past have pat suggestions and tend to throw up their hands when prsented with a real complex situation. Sigh.

Matt doesn't say much about this situation. He keeps reminding me that he might have both ALS and Celiac (or just ALS). He's always been better than me at controlling his thoughts and feelings.

Right now he's exhausted. He spent our first day home in bed, but insisted on getting up and going out yesterday. So, today he's sleeping again. I'm still unpacking, so maybe it's a good thing...
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Old 09-28-2015, 11:09 AM #15 (permalink)
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Default Re: Celiac Disease

Oh Becky, my heart breaks for you. I'm positive it was you who said to me the other day about this being a roller coaster...
To deal with complications with diabetes, coeliac, ALS and that damn chair that has a mind of it's own. You stay strong. I for one am glad you are reading up. I always reckon being forewarned is better than ignorance.
I'm sure you'll have no trouble with this, but keep busy, the biopsy is less than a month away, three weeks now roughly. Imagine how clean your skirting and grout will be! Seriously, whatever takes your mind off the waiting is all good.
Please keep us posted, we are 'hoping' all the way with you.
God bless, Janelle x
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