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Hi, Introducing Myself.

Guest spruette

By Guest spruette
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest spruette
Guest spruette
Posted

I was just diagnosed with Celiac Sprue (Disease) yesterday. I am brand new to this diagnosis, for years I thought it was irritable bowel causing all my troubles. Then last year, had a gallbladder removed and I still became sicker. Last week I had an endoscopy done by a OUTSTANDING gastroentrologist and he found in a biopsy that I was suffering from Celiac Sprue.

Couple of questions,

1. Anyone ever have any throat problems along with their other symptoms? Mine for a while felt like I couldn't breathe or that it was "closing up" on me. I was in the ER a lot the past few months before finding my doctor and they kept calling it asthma. But asthma meds didn't work. Nothing did. I am seeing an ENT Thursday but wondered if I am allergic to gluten, can I be suffering some sort of shock from it as well? Just wondering on that one.

2. I saw the post below about joint pain. I have a very very painful left knee, and also suffer from TMJ, could those be caused by Celiac?

I am extremely new to this only finding out 24 hours ago, so forgive my ignorance. Just looking for some guidance and maybe make a friend or two along the way. :)

{{Hugs To my Fellow gluten-free friends}}

Connie

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minibabe Contributor
minibabe
Posted

I feel and still feel like my throat is closing up......when i try to take a deep breath it feels like someone is sitting on my chest and I just cant do it. I have also had chest pains and doctors just tell me that it is somthing to do with my muscles around my heart and not to be worried, but this is extremely frustrating. If you find out anymore information on it I am willing to go and see and sort of doctor for this and willing to try anything.

I have not had to many joint pains, just what I find is that my hip, nee or shoulder may lock up and it hurts when it pops.

I was just diagnosed about a month ago and I am really new to this whole thing to, but what I found was that I went and saw a nutritionist and it really helped, she was so wonderful and she has the diease so it makes it really easy for her to talk to. The one thing that she stressed was cross contamination. If you need any help or possibly have any questions, feel free to ask and if I can help in anyway that would be wonderful. Welcome to the Message Board! and good luck :)

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Guest jhmom
Guest jhmom
Posted

Hi Connie and Welcome :D

I cannot answer your questions but I am sure someone else will be along shortly. Since you were recently dx I thought I would share a few links that really helped me in the beginning:

Mainstream gluten-free Food List

Open Original Shared Link ** must have Adobe to open link**

Open Original Shared Link

Safe and Forbidden food / ingredient list

Good luck on your new way of eating, I know you will be feeling better soon!

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zakismom Newbie
zakismom
Posted

I used to have problems with asthma but I haven't used my inhaler since going gluten-free. It's been just about a year for me and the differences are amazing. It will be worth the effort! Good Luck!

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mwical Newbie
mwical
Posted

Spruett,

Hi, I too have just been diagnosed with celiac disease. This is all really new stuff but thank God for the internet. I went to the library and only found one little paragraph in a medical journal about Celiac. I have had joint pain for years and the Dr. I went to for 12 years just kept trying me on different kinds of arthritis meds. like Celebrex and a host of others. I was also recently diagnosed with Diabetes, which my NEW dr. seems to think is connected to celiac disease. Some mornings I could hardly get out of bed and a couple of times I couldn't, and I am only 40 Yrs. old. :blink: I also like you have had throat problems, mine for about 6 years. It too the DR. thinks could be a result of Celiac. I don't know, but all I do know is that I went to my other DR. for 12 Years and have nothing but a pile of insurance reciepts to show for it, and my NEW Dr. found out all this in less than 2 months. Don't know if this helps but anyway, GOOD LUCK! B) Hope you feel better soon.

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Guest spruette
Guest spruette
Posted

Nice to meet you everyone.

I wanted to reply to you all seprately more personally, but I am still figuring out the board here and how everything posts.

Thanks SO much for all your advice. You all seem really nice and I am glad I posted yesterday. I had my first gluten-free chocolate chip cookie tonight and loved it. It was by Pamela's Bakery or something. My Goodness, everything is so expensive though. Wish I could find some less costly foods. Looking for recipes alot on internet to make stuff myself.

I will look at the websites offered here too. Thanks for those, btw.

Looks like I am in the right place. I am happy to know that I am not alone with this being new to me too. Last week, I thought there was something freakish about me, and that I was too different. But without feeling sorry for myself. I just thought it would be very difficult to weed out wheat and gluten products and concerns with health symptoms. It's so great to know that someone thought about a support board for us so we have each other to kind of help through all this.

I am 29 and also looking at possibly testing for diabetes, it's interesting that their may be a connection since Type 2 diabetes runs in the family. Does it cause excessive light-headedness? I am praying that it isn't. At least for a little while. I want to try and get used to one diet at a time.

Sorry to ramble. Thanks to all of you with your great support and advice. I will post here as often as I can. :)

Take care!

Connie

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darlindeb25 Collaborator
darlindeb25
Posted
;) connie--if my memory serves me--many type 1 diabetics also have celiacs, but most celiacs who go gluten-free and stick to the diet can most times not develop type 2 diabetes--i think anyways--you may want to read more about this--google it and see what you find--celiacs + type 2 diabetes--i do know that kids of type 2 diabetics are more prone to the disease---so much to learn huh :( deb
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flagbabyds Collaborator
flagbabyds
Posted

About type 2 it doesn't run with celiac, only type 1 i am not sure why, that is waht i am doing my science fair on.

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billfl Newbie
billfl
Posted

Minibabe....I also cannot take a deep breath w/o the feeling that my throat is closing up, but....I have pulmonary fibrosis. PF is listed as a disease probably associated with celiac disease. My celiac problemssss were exposed after I started taking prednisone and actimmune for the PF. So, the reason for my post is to suggest that if you are also having shortness of breath you should consider seeing a "good" pulmonologist. My PF went untreated for two years after it was noted by a radiologist, but my then primary doc didn't pick up on it.

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      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      Joint swelling when ill even on gluten-free diet

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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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