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Advice Needed, Im Newly Diagnosed


JessicaB

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JessicaB Explorer

My name is Jessica. I have been through alot since i gave birth to my daughter last year. Since then, which i had a great pregnancy with no problems or sickness, i have had servere stomach pain, bloating etc. I have been to about 5 different doctors and finally

i just got the blood test from my new gastronologist. He was the first one who said that i may have Celiac Disease. I never heard of it. I got my bloodwork back last week and he told me that one of the levels was a 72! Which i think is really high, he said it was. Another level was below normal and he said with those combined that i have celiac disease. I have to get a endoscopy and a biopsy done in January to confirm, but the test said that it is 99% accurate that i have celiac disease. I am worried. I have looked up alot of information but can really use some stories to make me feel like im not alone. Any advice, emails or lists please email me with your stories. Thanks!

lots of luv

jessica

22years old from Maryland


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Lisa Mentor

Jessica:

Don't worry. Celiac Disease is not a life sentence, it is a life style change. That change in your hand. No pills, no surgery, just simply, a diet change.

I won't elaborate here as there are many on this forum that are about your age and many other who develope Celiac Disease after childbirth.

I'm sure that they will be very helpful to you now.

For now, keep your food intake simple. Search this site for recipies, lotions, lipstick, shampoos (that can get in your mouth)

This is a time to study this site and ask as many questions of us as you need. There is a national phrase that is often used, "Celiacs Helping Celiacs".

There is most definately a time to adjust with many emotions, but we are here to help. All you need to do is ask.

Other relies will come.

Best of luck

Lisa B.

traveljunkie Rookie

Hello Jessica, and Welcome!! :)

I became gluten intolerant after taking antibiotics in Feb of this year, and like you I had never heard of celiac or gluten. Now with many months of research, and a gluten free diet, I have never felt better. I look back on all the health issues I've had in the past, and can see a pattern that probably was brought on by gluten. I've had on and off diarrhea or constipation, rashes, joint aches, etc., and I believe the antibiotics just pushed my body to it's limits.

I had blood tests done, and they came back negative. I had been gluten free for months, so it was probably false negative. I have tested positive through enterolab, but regardless of those results, I would have remained gluten free anyway. I did find the diet limiting in the beginning, but now it's just natural to me.

I'm not sure where you live, but most health stores and bigger grocery chains, sell gluten free foods. There are also great online stores that ship right to your door. I do alot of my shopping that way. It'll become easier for you as you learn more. This forum is great, just type in the search, for any topic you want info on.

Don't worry, like the other post said it's just a dietary change, you'll be fine.

Charlene :)

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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