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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?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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