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Afraid To Be Turned Away...again


Sapphire00

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Sapphire00 Newbie

Brief History?

I found out I was hypoglycemic at age 10. My mother baked horribly so I didn't eat much of her breads. Even though they were all whole wheat and honey. I got married at 19 and we used to eat french bread all the time. That's when the bloating started. I was always really skinny...but after than, I started getting the bloated tummy and bad constipation.

In my 20's it got really bad. I was gaining 5 pounds a week and it hurt just to touch my legs. I had bruises everyehere. I gained 40 pounds in 2 months.

I went to seek help and the Dr. prescribed Gas-ex. I was mad, but took it...Finally I got so scared I stopped eating all but one meal a day. Wheat, rice and any other grain triggered the bloating.

I haven't had issues like that until the last 2 months. With money being tight, I've started eating bread, and beans and rice...I can't digest it. I know it's fermenting in my stomach, that is now very distended and it hurts to push my belly button back in. But it does with a gurgling whoosh. I eat once a day, but I feel like I can't swallow. I physically, feel the food get stuck in my throat. I have heartburn all the time. And then the gas, that I have to hide and pass. Burping and the other...*blush*

The other day I was in so much pain, I had diarrhea and was vomiting all day

So, I started taking some Pro-biotic pills and stopped eating any grain, but had some rice cakes the other night. Woke up in so my pain, I couldn't hardly tie my shoes.

I'm on my third day of eliminating all grain from my diet. I want to go into the Dr. But I don't want to waste my time on a fake diagnosis...


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Bubba's Mom Enthusiast

I'd say..go into the Dr.s' office with a list of your symptoms and ask for a full Celiac panel. Many Dr.'s don't even think to test for Celiac. They most often just prescribe meds that counteract symptoms.

GFinDC Veteran

Right, get the celiac panel done. If your doctor won't prescribe the test get a different doctor who will. The blood panel is easy, they just draw a little blood and send it to a lab for analysis. After the test you can go gluten-free and see if it helps. It may take 3 to 6 months or more to really feel better on the gluten-free diet though. It is not an instant cure. So stick with it even if it doesn't seem to be helping.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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