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Questions From A Newbie


Joyful

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Joyful Newbie

When you are glutened, do you get confusion and memory loss?

I started noticing this a few months ago, after meals. I wouldn't be able to concentrate or remember things after eating grains, coffee, cheese... gluten protein analogues. I'm currently trying to get a doctor to consider celiac. I tested negative for alpha-gliadin, but I swear one night after three bites of oatmeal, I thought I was going to end up in the ER. There is something going on.

I'm thinking of ordering the Cyrex labs tests. Anyone tried them? Would you recommend a certain test?

I stopped eating all gluten protein analogues and I am feeling tons better, but not cured. How long does it take the gut to heal? Fasting seems to help. What else can I do?

Is there some sort of insoluble fiber I can take that is NOT psyllium? Does fiber help or hurt?

Sorry for all the questions. I'm so desperate to learn.

Thanks so much!

Joy


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Adalaide Mentor

One of the symptoms of celiac is what I learned from this site to call brain fog. Fortunately for me, although I suspect I suffered from celiac my whole life I only suffered from brain fog for about 3 or so years. I felt like I lived in a surreal world. I got very ill shortly after being married and while I remember big moments, I remember absolutely no small details. I've lost pretty much most of my marriage to celiac. If I get cc I feel disconnected from the world, sort of like it just kind of isn't quite real. I never discussed this with my doctor the entire 3 years I felt this way because I didn't want to end up in the loony bin.

Blood tests can be useful. I don't remember which ones in particular but someone else will, but they aren't always right. My blood tests came back negative although they were done the same day I had a biopsy done that came back positive. Since you are still eating gluten, I would suggest having the biopsy done. Then, no matter the results follow your gut. If you feel like it could be a problem, eliminate from your diet and see if it helps. If you feel better not eating it, then don't eat it. Just remember, you can't test if you aren't eating it.

GFinDC Veteran

Hi,

Here are some threads that may help.

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?

How bad is cheating?

ker0pi Rookie

Hello,

I am a "brain fog" sufferer. It was my first symptom, I thought my pregnancy "baby brain" just never went away. I was so forgetful and that was something I had never experienced in my life, I work with numbers and could quote any figure from a financial statement I had just looked over, that went away. I kept blowing off my husbands concerns, telling him it was completely normal to be a scatter brain after having a baby. Well my baby is turning 6 next week and I'm still scatter brained, much improved after going gluten-free 4 weeks ago. I had some other joint pain and balance issues that went away as soon as I went gluten-free. I tested negative in my Celiac Panel but went gluten-free anyway and for me, that was most definitely the problem. Now that I've been gluten-free for 4 weeks I have really reflected and realized I had plenty of other symptoms over the years that point to Gluten Intolerance or Celiac. I decided not to push for a biopsy myself because I have a really horrible reaction to general anesthesia. The improvement I have had after just 4 weeks is enough for me to stay strict to this diet.

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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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