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New To Gluten Free


bjaded

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bjaded Newbie

Good morning all! I am 22 years old and 99.9% sure I have a gluten intolerance. I was born with a lactose intolerance and quite honestly I've always had tummy problems. (bloating, constipation, gas, diarrhea etc.) For the past year I've wondered if I had gluten problems but everything came to a head this month. I was sick immediately after eating anything with gluten. I developed stabbing pains in my stomach and headaches. There were times I would have to leave my desk at work 4 times or more do to an upset stomach.

I started doing research and kept a food journal and took pictures of my swollen tummy after eating gluten. I noticed with in 30 mins I would have awful symptoms. This week I have been eating gluten free to the best of my ability (only gluten free foods! hopefully I'm not accidentally digesting it.) But this is the best that I have felt in weeks!

My fiance still wants me to get testing because he is concerned but I know they are not all 100% conclusive. I've thought about just a dietitian. Where do I go from here? I'm not crazy am I? ha!

Thank you for your help!!

Jade


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Celiac Mindwarp Community Regular

Not crazy!!

If you can stand it for a bit longer it is worth carrying on with gluten to get blood work and a biopsy done.

I had been off wheat for years when I realized I had stacks of celiac symptoms, so blood work came back negative, and to be honest I expect my biopsy to be negative too.

I did do a gluten challenge, but only lasted 3 weeks, not the 6 weeks needed. The lab lost my results, so I tried again but lasted 5 days - it seems many people react more once they start gluten free, on the journey to sorting things out.

I think it is harder sometimes without a full diagnosis to get other things like annual blood work. I am struggling to get my kids tested, for example.

So - I would say do the tests, on gluten if possible, if you can.

It is also worth seeing a doctor to rule other conditions out.

That said, you wont be alone if you end up self diagnosed.

Hang in there and good luck

GFinDC Veteran

Hi Jade,

I don't know if you are crazy or not, but many people do have celiac. :D It is much easier to get the blood antibody test panel done now, before going gluten-free. It is likely you would need to do a gluten challenge fora while if you do it later, and that could be very painful. Reactions to gluten seem to intensify after going gluten-free.

By the way, did you see which way the big white rabbit went? :)

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/

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.
    • Seaperky
      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
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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