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So Many Questions!

kowkitty

By kowkitty
in Coping with Celiac Disease

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kowkitty Rookie
kowkitty
Posted

:o

So when I was a toddler I was apparently diagnosed with Celiac disease. This was 1967..... the MD told my mom that I would outgrow it which was the train of thought back then. Anyway to make a long story short. I'm a 41 year old female who has been relatively healthy but has always suffered from stomach problems. Really very rarely catch even a cold. Just always said I had a senstive stomach or nervous stomach because any anxiety would send me running to the bathroom. I never connected anything to it - just accepted it. Had noticed over the past few years that every time Id have a cold beer Id end up feeling congested and with a terrible headache but food issues... never really narrowed anything down. I've been an athlete most of my life and have always had aches and pains, history of anemia a few times which seemed to go away on its own, developed a strange prolonged QT heartbeat a few years back which no one has ever been able to figure out. Had a severe reaction to mono when I was 17 - ended up with an inflammed liver, fever for 3 months, sever headaches, ended up hospitalized because they could not figure it out and never did. Woke up one morning in the hospital with no fever and everything returned to normal.

Now my Mom and I wonder if the Celiac disease had anything to do with this?

Lately I've not been feeling well, so tired, headaches worse, stomach ache everday - going once sometimes twice a day. Not been running much because Ive just been so tired (very unlike me)

Was talking to my mom the other day and we somehow got into a medical conversation and the celiac came up. We looked it up and both realized that things have changed since 1967 and you dont outgrow it!!

Well, put myself on a glutten free diet starting today to see if I feel better and have an appointment with my MD in two weeks. Being a runner Ive lived on pasta for most of my life so it is tough - had some rice pasta today.. not bad though...

Any diet suugestions????

Any good sites to look up??

Anyone know if any of my past medical history could be connected?

Sorry for sooooo much info and questions but this is just a real eye opener for me.

Jackie

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adiftime Rookie
adiftime
Posted

I've just recently been diagnosed with celiac myself. But from what I understand you shouldn't change your diet before your doctors appointment. If you have stopped eating gluten before the doctor test you blood, it will give a false reading. If you can, hold on till after your appointment to change anything.

Good Luck! Keep us posted on what you find out.

:o

So when I was a toddler I was apparently diagnosed with Celiac disease. This was 1967..... the MD told my mom that I would outgrow it which was the train of thought back then. Anyway to make a long story short. I'm a 41 year old female who has been relatively healthy but has always suffered from stomach problems. Really very rarely catch even a cold. Just always said I had a senstive stomach or nervous stomach because any anxiety would send me running to the bathroom. I never connected anything to it - just accepted it. Had noticed over the past few years that every time Id have a cold beer Id end up feeling congested and with a terrible headache but food issues... never really narrowed anything down. I've been an athlete most of my life and have always had aches and pains, history of anemia a few times which seemed to go away on its own, developed a strange prolonged QT heartbeat a few years back which no one has ever been able to figure out. Had a severe reaction to mono when I was 17 - ended up with an inflammed liver, fever for 3 months, sever headaches, ended up hospitalized because they could not figure it out and never did. Woke up one morning in the hospital with no fever and everything returned to normal.

Now my Mom and I wonder if the Celiac disease had anything to do with this?

Lately I've not been feeling well, so tired, headaches worse, stomach ache everday - going once sometimes twice a day. Not been running much because Ive just been so tired (very unlike me)

Was talking to my mom the other day and we somehow got into a medical conversation and the celiac came up. We looked it up and both realized that things have changed since 1967 and you dont outgrow it!!

Well, put myself on a glutten free diet starting today to see if I feel better and have an appointment with my MD in two weeks. Being a runner Ive lived on pasta for most of my life so it is tough - had some rice pasta today.. not bad though...

Any diet suugestions????

Any good sites to look up??

Anyone know if any of my past medical history could be connected?

Sorry for sooooo much info and questions but this is just a real eye opener for me.

Jackie

Luisa2552 Apprentice
Luisa2552
Posted

I agree with the previous poster. In order to get the most accurate blod tests you need to be on gluten. If you were diagnosed as a toddler as having celiac disease then you still have it. You know now it does not go away. Have a full celiac panel run to include EMA and TTG titers (most celiac panels should). Most gi docs then want to do an intestinal biopsy. That's up to you. Lost of folks on here pass on that, especially if they have a positive response to a gluten-free diet. I did the biopsy because as you see in my signature I had mixed results with the titers.

These boards have been the best resource for me. All my questions have been answered. Also read Danna Korn's Living Gluten Free for Dummies and Celiac Disease; A Hidden Epidemic by Peter Green.

kowkitty Rookie
kowkitty
Posted
  • Author

Hi, thanks for the replies. Definitely appreciate any advice. Funny... been living like this for 41 years so it all seemed normal to me. Now sooooo many things make sense. I stopped the gluten free thing (well only did it for 2 days) have an appointment with my internist in two weeks. Doing more research and have found so many things.... I've had dry eyes and dry mouth and skin (not as much) as far as I can remember. I work in ophthalmology so I just grab a bottle of tear drops when needed (have to use them each day) sjorgens syndrome can be relates to people with celiac.

Also.... had serum sickness a few years back after getting a secondary measles vacination required by Fordham University (went back to finish college) I know many people seem to be so upset about the diagnosis and please dont misunderstand.... I'm just so happy to have reasons for all these things I've been suffering with for my entire life. At least there seems to be a ton of gluten free stuff out there and I'll try whatever I can to feel better

Jackie

I agree with the previous poster. In order to get the most accurate blod tests you need to be on gluten. If you were diagnosed as a toddler as having celiac disease then you still have it. You know now it does not go away. Have a full celiac panel run to include EMA and TTG titers (most celiac panels should). Most gi docs then want to do an intestinal biopsy. That's up to you. Lost of folks on here pass on that, especially if they have a positive response to a gluten-free diet. I did the biopsy because as you see in my signature I had mixed results with the titers.

These boards have been the best resource for me. All my questions have been answered. Also read Danna Korn's Living Gluten Free for Dummies and Celiac Disease; A Hidden Epidemic by Peter Green.

DeerGirl Apprentice
DeerGirl
Posted
developed a strange prolonged QT heartbeat a few years back which no one has ever been able to figure out.

Odd coincidence here. Just been posting about Vitamin D in another area of the forum, and I noticed your posting in this area. By no means am I an expert on prolonged QT times, but... I know from reading up on Vitamin D deficiency / hypocalcemia that these things can be related to prolonged QT times. Try googling this. There are also other symptoms of Vit D deficiency - but of course not everyone has them, and also, not everyone with prolonged QT would be deficient either.

You might want to ask your dr. to test you thoroughly for Vit D deficiency (more than one type of blood test)

Just a thought.

wowzer Community Regular
wowzer
Posted

I had a little sister diagnosed with celiac in the 60's. They said she could outgrow it too. Celiac never goes away. She has many other health ailments because of it. I wish you luck and hope you are feeling better soon.

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