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New, With Many Questions....

HeatherR

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HeatherR Newbie
HeatherR
Posted

Hello all,

This is my first post, but I've been reading through your posts. I don't even know where to start. My son has the celiac gene and has been BACK ON wheat for the last month or so to have his biopsy. He is 12.

We've been dealing with this problem since he was five and the doctors would just give him a laxative and tell him he needs to try harder to go. Yep, why didn't we think of that? Anyway, he's been off wheat and dairy for 2 1/2 years now, and is sure enjoying himself ( As long as he takes his laxative twice a day!)

Okay, after we found out that my son had the gene, and my husband (who is allergic to wheat) does not have the marker, I had to be tested. I'm still waiting for the results.

But I had bought a book on celiac earlier so that my son and I could go over the things he could and could not have when he's reading labels. I decided to read the entire book since my son has the gene, and I wanted to know everything about it. I was floored!!!

I have been ill since my youngest son was born! And I was absolutely shocked at some of the symptoms that come from celiac. I have been on disability for 6 years diagnosed with ms. I have a new neurologist, and he says I don't have ms, but I have something.

My symptoms are so many, and on and off, but the absolute worst one is fatigue. I sleep all night long, and will be so tired when I get up that I will sleep for another four hours or so, almost daily.

I have balance issues, dizziness, vertigo, shooting pains, nerve pain, swelling of my hands, feet, ankles, and calves, numbness, tingling, brain fog, problems using the right words, cognitive problems, memory loss, joint pain. There's more, but I can't think of it right now.

My question is, has anyone else had these symptoms and have it be celiac?

I know this is long, but I appreciate all who take the time to read it.

HeatherR

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CarlaB Enthusiast
CarlaB
Posted

It could be. Have you been eating gluten-free? If not, are you planning on being tested?

You have pretty serious symptoms that may or may not be celiac. I think it would be good to be tested so you know for sure if you're not already gluten-free. Those symptoms can be celiac, in answer to your question, but they can be other things as well.

When I was eating gluten, I had many digestive symptoms, weight loss, dizziness, fatigue, brain fog, joint pain, bruising, etc.

I have fatigue really badly, too. It's gotten so much better since I've read Tired of Being Tired by Jesse Lynn Hanley, MD and implemented her ideas. I think you'd get a lot out of the book whether gluten is your problem or not.

Keep us posted, feel free to ask questions, and welcome!!

HeatherR Newbie
HeatherR
Posted
  • Author

Thanks for the input. I am still eating gluten at the moment in case I need to be tested. I have gained almost 60 pounds :( due to new meds for pain and such, and feeling increasingly desperate.

As soon as I get the test results back, I'm going on low carb again. I feel much better and maybe I can get some of this weight off, or at least stabilize.

I am really curious to see the results.

HeatherR

CarlaB Enthusiast
CarlaB
Posted
Thanks for the input. I am still eating gluten at the moment in case I need to be tested. I have gained almost 60 pounds :( due to new meds for pain and such, and feeling increasingly desperate.

As soon as I get the test results back, I'm going on low carb again. I feel much better and maybe I can get some of this weight off, or at least stabilize.

I am really curious to see the results.

HeatherR

If you felt better low carb, you very well could have a gluten problem. Keep us posted and feel free to ask more questions.

mouse Enthusiast
mouse
Posted

If you had the test done, please keep in mind that you can have a false negative, but not a false positive. Some doctors do not totally accept the blood test, even if it is positive and insist you have the biopsy done. But, that is sometimes iffy. They have to take 8 to 10 from the right areas to get a Celiac diagnosis. And there are some doctors who accept the diet as definately gluten intolerant. Also keep in mind that if it is Celiac or gluten intolerant, they both require a totally gluten free lifestyle. It is really not that hard to go totally gluten free. I don't know if your son was gluten free, all the way or not, for that 2 1/2 years. Did they tell you how long he has to be on gluten before the tests. It is recommended 3 to 6 months ingesting gluten equivelant of 3 slices of bread a day.

And to answer yout first post. Yes, I had many of those symptoms, before I really went downhill for many months before my diagnosis. The problem is I was diagnosed to late and I now have other problems which come from the late dignosis. My daughter was 40 when I was told I had Celiac. Your son is 12. You need to investigate all avenues to better health, including Celiac. If your Neuro dr. says you do not have MS. Ask him to test for any Neuro problems that could arise from being an undiagnosed Celaic. That way you will keep connected to him. It is important with your problems that you have a Neuro that you like and trust.

Good Luck.

marciab Enthusiast
marciab
Posted

"My symptoms are so many, and on and off, but the absolute worst one is fatigue. I sleep all night long, and will be so tired when I get up that I will sleep for another four hours or so, almost daily.

I have balance issues, dizziness, vertigo, shooting pains, nerve pain, swelling of my hands, feet, ankles, and calves, numbness, tingling, brain fog, problems using the right words, cognitive problems, memory loss, joint pain. There's more, but I can't think of it right now.

My question is, has anyone else had these symptoms and have it be celiac?"

Welcome to the board :)

I had all of your symptoms except the swelling. But, I also had mobility problems and used a motorized cart to go grocery shopping. And visual disturbances especially when walking. And ADHD. And a mystery rash that sounds just like DH. And allergies. :P

I was diagnosed with CFIDS/FM and put on total disability back in 1992. But all this started in 1990 after catching the "flu" that never went away.

Just in the last 6 weeks, most of my symptoms have subsided. One year after going on the gluten free diet. I also eliminated soy, dairy, corn and eggs due to digestive problems.

I can walk normally now. :D:D I love saying that. :D

I don't have an official celiac diagnosis, but my GP decided I was gluten intolerant because immediately after getting the gluten out of my diet I was no longer hyper. Next time I see her I will ask her about this.

So, I believe I am a celiac ... A lot of people consider a positive reaction to the diet a firm diagnosis of celiac.

I am still dealing with some fatigue, but I am having too much fun to rest. B) And I am peri menapausal and deep into hot flash territory. Whew !!!

I hope you find the answers you are looking for. This a wonderful board with a lot of great people. :)

Marcia

tiffjake Enthusiast
tiffjake
Posted

Welcome Heather!

I had many "weird" symptoms because of celiac disease. I second CarlaB. If you want to get blood work done (the celiac blood panel, tTg, IgA, IgG, Esa, i think there is one more...) then you will want to be EATING gluten until you have that done.

But your symptoms sound like they COULD be celiac disease. You could have something else going on that is agrivated by celiac disease. Do go by the gene test alone, because something like 1% do not have the gene....

But welcome, and I hope you find your answer and are feeling much better soon!

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HeatherR Newbie
HeatherR
Posted
  • Author

Thanks guys. I have been eating gluten, always.

Is there a different test than the one I did? It just said celiac profile.

I guess I'll find out soon enough. I really want to get started just to get some of this weight off.

I'm having surgery soon, and I'd like to have a little headstart, ya know?

HeatherR

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