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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
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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