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New To The Site With Alot Of Questions

TiredofTums

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TiredofTums Rookie
TiredofTums
Posted

:unsure: Hello new friends! My name is Linda and this is the first time on the site. I just joined tonight after talking to an administrator on the phone and she was very nice and led me here to this site. I have not been diagnosed yet and am going in the hospital on December 19th for an Colonoscopy and Endoscopy and I pray that I finally have some answers after years of suffering and the terrible damage this has caused my body.

I also plan on getting some test done when I see my Doctor on Tuesday. So hopefully those test will finally lead to a diagnoses. I am in my late 40's and have suffered for years with terrible upset stomachs. The gastrologist I just recently saw seemed to be very good and he saw several things in my records that leads to Celiac Disease and plans on doing both test December 19th to do biopsies of my intestines.

I started out in my teens having upset stomachs and cramping and by the time I was 19 I noticed the upset stomachs were worse. Got tested and nothing was found. But the test they ran did not test for Celiac. At the age of 25 I noticed a itchy rash on my skin. Blistery rash that comes and goes. Mouth ulcers, joint pain and the doctors thought it to be Lupus. Even got diagnosed with a neuropathy. Have seen many neurologist and other doctors but nothing ever shows up in my labs to indicate Lupus.

So far I have been diagnosed with Neuropathy at the age of 29. Rash that was thought to be Lupus. Mouth Ulcers, Joint Pain, Headaches, Numbness and Tingling, Dizzy spells, break out in sweats and then get upset stomachs that have a yellow colored bile. Gerd, Diverticulitis on CT Scan, Muscle Twitching, Osteosporosis, A Pernious Anemia Vitamin B-12 problem and now a Vitamin D and am tired of taking Tums and Anticids that are not working for me.

If this does happen to be Celiac what can I expect as far as treatment. I am taking one a day Multi Vitamins and several medications and am fearing they may be causing me more harm than good. Afraid to eat anymore because I get sick all the time. Have a terrible sleep pattern. What are al the symptoms of Celiac and how long does it take to start feeling better. Do they put you on medications. Does the insurance companies cover medical problems for Celiac!

I'm scared but at the same time want answers in hopes I get better and not worse. This stuff is killing me and I have gone along time. Never saw a gastrologist before because I thought this was Lupus and so did my doctors. Now my doctors are telling me it's not Lupus causing all my problems.

Sorry this was so long but I need some advice and do hope you all welcome me to the site! I am looking forward to meeting you all and making new friends.

Sincerely,

Linda that is Tired of Tums

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zero Newbie
zero
Posted

Yikes! You have been on quite a roller coaster so I wish you luck in your exam. I was put to sleep for mine so it was probably the easiest medical thing I ever did. The biopsy results took about a week or two to come back and my insurance covered it. Have you had a blood test? It seems like everybody's symptoms and experience with celiac is different. But given everything you have been through I strangely hope it is the source of your problems. If you are going to have an incurable disease then celiac is probably one of the better ones to have as all you have to do is avoid gluten in your life. Easier said than done. Recovery can sometimes take a while but it is something to look forward to.

rob

happygirl Collaborator
happygirl
Posted

Welcome to the board, Linda!

The treatment for Celiac is the gluten free diet. No medications specifically for Celiac.

Here are some good links to get you started learning about Celiac (along with this forum)

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

luvs2eat Collaborator
luvs2eat
Posted

As you'll see from this awesome site... it seems like no 2 people w/ celiac disease have the same symptoms. But, my goodness... you've been dealing w/ this for a LONG time. I was diagnosed in my late 40s after only several months of intestinal symptoms. As said previously... a gluten free diet is the only treatment. It can be challenging, especially if you don't like to cook, but it's not at all impossible.

Truthfully... it took me a whole year for my intestines/bowels to get back to what I considered normal. I didn't feel sick during that time, but I made lots of mistakes w/ what I thought was a gluten free lifestyle and about finding gluten in random things.

As I said... this is the place to learn lots!! Good luck on your tests!!

Lisa Mentor
Lisa
Posted

Linda Welcome!!!

As you can see, this is a great site with the best information around.

Here is the link again, that happygirl listed. Copy this information and take it to your doctor on Tuesday:

Open Original Shared Link

Insist on the full Celiac Blood Panel as listed above and keep eating gluten until your endoscopy is completed.

Let us know! This could be a new beginning. ;)

Lisa

TiredofTums Rookie
TiredofTums
Posted
  • Author

:rolleyes:Thank you all for responding to me about Celiac. I came in here last night and looked at all the sites that everybody gave me and was shocked at how many were in Utube telling about Celiac disease. Wow! So many in here too with the nasty disease. So weird how we all got this way with Gluten. The damage it can do and how bad it can get if not treated. Seems I have been eating nothing but Gluten. I have a 70 year old mother too that has been sick with the same symptoms and a daughter along with a nephew and possibly my one grand-daughter showing a problem. So I am very concerned now at getting a diagnoses. If I have it then they most likely too have the disease. It seems that right now me and my mom along with my nephew are the worst being so sick. So I hope this doctor is right. I will keep you all posted on what they find with me. But thank-you so very much for showing me to insight to the disease. I look forward to meeting you all in here and becoming a regular member once I have the official diagnoses. Thank you so much!

Sincerely,

Linda That is Tired of Tums

Linda Welcome!!!

As you can see, this is a great site with the best information around.

Here is the link again, that happygirl listed. Copy this information and take it to your doctor on Tuesday:

Open Original Shared Link

Insist on the full Celiac Blood Panel as listed above and keep eating gluten until your endoscopy is completed.

Let us know! This could be a new beginning. ;)

Lisa

ang1e0251 Contributor
ang1e0251
Posted

Just wanted to add my welcome to you and I can certainly see why you are tired of Tums! I had the endoscopy and it was a piece of cake. I was rather a coward about it and then embarrased because it was to easy.

I hope things go the way you want. I was glad to find all the answers to my weird maladies. I don't resent the diet because I now feel so amazing! At least 20 years younger!!

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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