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billybobhobw Newbie
billybobhobw
Posted

I was given a endo yesterday and was told that I have a mild case of celiac along with mild gastritis. I am also slightly anemic. I am guessing this adds up to celiac. So my question is this - For each of you. I am just looking to get a handle on this thing and what it means. As a heavy gluten eater before this - i wonder is I has symptoms and did not notice or if just sort of happens. Thank to anyone who answers.

 

How old were you when you were diagnosed?

 

What triggered you to seek out medical help?

 

How has life changed since your diagnosis?

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nvsmom Community Regular
nvsmom
Posted

Your doctor said, "mild celiac"? Sheesh. That's like telling a woman that she is "just a little bit pregnant". You either have it or you don't.... Statements like that can be so misleading when said to a patient uneducated in celiac disease. Sorry, my rant is over. ;)

celiac disease can just happen suddenly or symptoms can build slowly over time, even come and go over the years.

I was 38 when diagnosed but I've had symptoms since early childhood.

I suspected my son had gastro issues, maybe celiac, and I did not want him to have pain like I did. A friend encouraged me to get tested with the argument of 'why should I have pain too'?

No pain or bloating after most meals. Migraines happen only a day or so a month rather then for a good dozen days. Hair is thickening. Some reduction I joint pain. Discovered hypothyroidism with a routine screen (it is linked to celiac disease). Started my kids celiac disease and they feel better. I have to pack food when out for the day and can't just stop in at a fast food place. I bring casseroles and food when visiting relatives.... Overall, I feel better but it's a bit of a hassle when eating away from home.... Worth it though. :)

1desperateladysaved Proficient
1desperateladysaved
Posted

.

 

How old were you when you were diagnosed?  I was 48 years old.

 

What triggered you to seek out medical help?  I nearly died around 43 years old due to malnutrition causing heart issues.  I sought out help from a chiropractor that had previously really improved my health.  We used supplements that brought my blood pressure down and to a  normal curve.  However, we did not know that I had celiac disease.  I had no family history.  I didn't have the classic symptoms, but mostly brain fog and fatigue.  The chiropractor's queries about whether I still consumed gluten caused me to go home and look it up.  I thought if I did have a gluten problem that it would explain many of my health issues.  I had a genetic test and 4/4 alleles for celiac were found.  I took this to an MD and said, "Please, discredit this test."  She looked at my bloated tummy, listened to my gluten free diet trial reactions and told me never to eat gluten again.

 

How has life changed since your diagnosis?  It has been hard making changes over the last year.  I went through a time of grief when I realized that I had been really sick for so long.  I made many mistakes that made it seem I was starting over from scratch.  Yet, I am so glad that I am finally getting to the root of the problem.  It is making a difference.  I tell my family that being gluten free is a piece of cake compared to the way I had been living.  I would encourage you to make the changes and enjoy it all you can.

 

I have discovered I am super-sensitive and need to avoid eating away from home.  Even my own food isn't safe while eating next to others.  I can't tolerate gluten in my home.  Even in spite of all of this and more, I am so glad I am on the road to deliverance from celiac trouble.  I am hoping my children will be spared years of suffering.  My children have a 50/50 chance of having celiac on my side.  One of their cousins has celiac on my husband's side.

 

I found substitutes for nearly all of the foods that I lost.  I am happy with them and enjoy my food very much.  Now, if I could just get my family all to like them as much as I do.

 

I am just over one year gluten free.  My head isn't foggy and my fatigue level is tolerable.  I am much better.  Thank God!

 

Please, get well and stay well.

Diana

Auntie-Manda Apprentice
Auntie-Manda
Posted

Disclaimer: I haven't officially been diagnosed, but doc said it's "probable" based on symptoms... eating gluten for several weeks to do the testimg would seriously kill me!

 

How old were you when you were diagnosed? 26

 

What triggered you to seek out medical help? daily headaches for 12+ years changed to daily migraines, and I couldn't function. Got meds for migraines, but was still getting migraines. gluten-free diet was suggested by a friend whose wife gets migraines from gluten.

 

How has life changed since your diagnosis? Well,  I don't have migraines :) I've been able to pinpoint different headache triggers, and avoid those at all costs. I've also been able to pinpoint how gluten affects me (migraine & stomachache 1.5 hours after eating it; constipation& bloating for up to a week) vs dairy isues (stomachache & constiation). I am learning my body and finding ways to feel good for the first time in as long as I can remember. Eating gluten-free isn't even a big deal because I am able to feel ok. When I get glutened, I lose a day with a migraine, and my stomach/GI issues take a week to go away. I am literally doubling over in pain most of that week. 

Auntie-Manda Apprentice
Auntie-Manda
Posted

Oh, and I have so much more energy now! I've been able to exercise on a regular basis, and I've lost 20 lbs since Feb!

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