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Newly Diagnosed But Not New To Celiac


tannilisa

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tannilisa Rookie

I was recently diagnosed a few weeks ago with celiac after bloodwork and endoscopy, the weird thing is that my husband also has it and has been gluten free for 7 years. I pretty much already ate a lot of gluten free because of hubby so the diet isn't too hard, but the diarrhea has gotten a bit worse than before for some reason? I literally have to run to the bathroom right after a meal, especially at night. We have gluten free pans, toasters, utensils, cutting boards and condiments so no chance of cross contamination (I have two sons who still eat regular bread ect) I have been careful about washing hands after handling regular bread and pasta and we never go out to eat. I even checked my prescription meds, toothpaste, mouthwash and all are gluten free. Is it normal to have increased diarrhea after Going gluten free for a while? I'm hoping it's just my system re-adjusting. My mother in law also has celiac and suffers from diarrhea too even though she's totally gluten free for years.


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missmellie Newbie

Hi, tannilisa. Most likely you are reacting to something else, in addition to the gluten. Many of us react to dairy and soy, and there are lots of other possibilities. Some people find it helpful to keep a food diary so they have a record of what they have eaten. Then they can figure out what they ate that caused a reaction. Hang in there. You have my sympathy. You are not alone. I'm going through more testing, too. None of this is fun. But, I have faith that we will get better. :)

GFinDC Veteran

Dairy and soy are possible problems, and also just adjusting to the gluten-free diet. Try some of the tips below to see if they help. It is not usually a one trip to better health on the gluten-free diet, it often involves lots of dips and valleys with a high spot here and there. An elimination diet might help but I wouldn't try that until you have been gluten-free for 3 to 6 months.

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 gluten-free vitamins.

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/

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What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

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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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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
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