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Has Anyone Ever Won The "waiting Game"? N How?

JH85

By JH85
in Coping with Celiac Disease

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JH85 Rookie
JH85
Posted

So as a few here know I had a blood test done that will more than likely be a false negative. I'm also waiting for the Neurologist to call with a date to get MRI'd of course my luck would have it, both my general doc and the neurologist closed early today at 2pm and won't be in the office till monday at 7:30...... Sucks about the blood test being that is going to be a false negative due to me being gluten free for over a month now. Me "glutening up" is out of question due to how violently ill I get with but a taste. My doctor also believes my symptoms of Ataxia and early on-set MS (combination of celiac, bipolar, balance issues, loss of short term memory etc.) So all of these things are on hold till its "convenient" for my doctors. In the mean time I will have to deal with not being "sick" but deal with these other things for at least 3 1/2 days. I broke down last night on the couch with my wife for about an hour or more because after living in the same place for 23 of my short 26 years. I've began to be unable to walk through door ways without running into them. Thankfully I have crazy long arms and the house isn't huge so that I can put a hand on a wall if I lose my balance. Also I've walked up and down my stairs in this house probably 1 million times or more AT LEAST! Now, I must hang onto the hand rails so as not to trip and fall. Did that last night and spilled a glass of sweet tea everywhere ergo the break down. Its nice to know that there are people dealing with the same disease and many side affects that are able to come here and help on another in any way they can. At times I know I think I may not be helping but I realize that we all have strengths and weaknesses and knowledge about different things with this horrible disease. Ones who have not been dealt this hand can help but never truly understand what goes on inside emotionally. I am SO GLAD to have found EVERY ONE that is here, Thank You. :D:wub::ph34r:B) <--- The last two I just wanted to use cuz I liked them ;)

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chasbari Apprentice
chasbari
Posted

I understand the emotional turmoil. It's odd when you appear to be ok to everyone.. at least by some sort of minimalist standard, when you know that nothing is working right. It's enough to make you crazy at times. Then, when the doctors don't really help it is frustrating as well. You already made a valuable decision. I stopped glutens before I ever got a positive diagnosis by way of biopsy. No way I was going to restart something that I knew was harming me so much. You have my permission to trust your gut instinct (you don't really need it... just thought I would offer.) It seems like so much of the medical runaround I went through was to make the doctors happy with themselves. I already knew the answers and yet it seemed like I had to have some official badge to prove to everyone else I really wasn't crazy. That's crazy! Be strong.

JoshB Apprentice
JoshB
Posted

Wait and see what the test says. Your antibodies probably would not have dropped in a single month.

eatmeat4good Enthusiast
eatmeat4good
Posted

Welcome! At my sickest I had to crawl up the stairs in our home, and I always bumped into walls or worse, people while simply trying to walk across the room. It was awful. I cannot believe gluten could have caused all of that and I don't want to give you false hope in case you have something else neurological going on...but I can't help but relate to you because there are many more people who have the gastrointestinal problems and I had the neurological ones....like you may have. I am hopeful for you that you will lose some of your symptoms when you have been gluten free long enough. I don't bump into things or have to crawl anymore. At least you tried being tested. And you know gluten is a problem for you so you are well on your way. I just wanted to say hi and welcome and to let you know there are other neurological Celiac wall-bumpers out here. :) I was so fumbly and bumbly with spilling things and knocking things over...I thought it would never end. It lasted 7 years but it did go away after less than one year gluten free. You will have emotional ups and downs and you will have physical ups and downs, but at least you are limiting any further damage from gluten by eliminating it. Good for you! ;)

JH85 Rookie
JH85
Posted
  • Author

Thanks for your support, I will be more active on here next week I'm sure. I will always need everyones support on here. I can't tell you the amount of times I've googled questions on everything celiac and have been redirected here. There is more than an abundance of knowledge and know how and friendship on these forums. :)

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm pretty new to the gluten-free diet. I was just Dxed 7 weeks ago. If I get glutened by something one of my reactions is dizziness and bumping into walls. I don't even try to go up or down the stairs without holding the hand rail, so I know your frustration. :(

I hope the Dr.s can come up with some answers for you.

Sometimes the blood tests are negative even if the person has been eating gluten all along. I was one of those. The endoscope with biopsy gave me the Dx.

I recommend you try to be completely gluten-free and be sure to avoid even traces of it. It will take time for your system to heal, but hopefully you will get some relief.

I thought I'd also add..soy gives me those symptoms too. It's best to eat a diet of fresh fruits and veggies and unprocessed meats.

It might be a good idea for you to keep a food log? Write down whatever you eat, including brand names..and any symptoms you have.(note that some symptoms have a bit of a time delay..just to make it harder? :blink: ) It will be useful in finding out if you have sensitivities to artifial sweeteners, or chemical additives, or a certain food group like nightshades. Hopefully, you won't have to do any detective work and will improve off gluten.

Best wishes to you!

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      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
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      By captaincrab55 · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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