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Newbie Saying Hello


Foolish-Michie

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Foolish-Michie Newbie

After daily lurking, I've finally decided that being lonely with my AI issues is silly. So this marks my official move from 'Guest' to actual entity with a profile pic and everything. Before I introduce myself, I want to say thank you for being such a great resource over the last several months! My adjustment would have been far more difficult if I hadn't been able to call on the experience of the many who are active here.

 

My story is, I suspect, fairly typical.

 

About three and a half years ago, my health started to deteriorate but I didn't see it for what it was because there was no obvious connection between the varying problems. One month my ankles would swell alarmingly and pain in my foot joints would make walking excruciating. The next month, I would get heart palpitations and shortness of breath. Then, a sharp pain around my right kidney/adrenal area came along and I suddenly needed to pee 60 times a day for weeks on end. Ultrasounds showed that my kidneys were fine and a bladder biopsy showed the same. Malaise, brain fog spells and difficulty concentrating followed and menstrual periods became so infrequent that I wrote everything off to early menopause.

 

Within a year, de-pigmented patches of skin started appearing on my torso and coping with the extreme stress on my plate became more and more difficult. I got every cold and flu going around and recovery times were abnormally long. Food travelling through my intestines began to turn to mush and headaches became regular visitors. Then came the fatigue.

 

Builders working at my house would laugh at me because I was always asleep. In January (after the builders and their constant dust had finally gone), the horrendous vertigo and dizziness set in. My brain fog and troubling sense of detachment become so constant that I wondered if I was dealing with brain damage. The vitiligo spread to my face and my hands. Heat (I was in the southern hemisphere where January means summer) became unbearable. My stomach always felt off. Flatulence became my shameful secret. Occasionally, I would get little water blisters on the inside of my forearms when I ate wheat. But they went away within an hour or two so I wrote them off as just another oddity.

 

Then, thank God, I got a stomach bug that seemed to go on forever. My need for sleep went up to 18 hours a day. I had a bone deep sense that death was looking over my shoulder yet felt strangely apathetic about it. I mentally started making plans for who would take care of my youngest child once I was gone.

 

Finally, I went to see an endocrinologist - who proceeded to ignore 75% of the symptoms I related. He diagnosed a vitamin D deficiency (14.9) but ignored an albumin level that was at literally the cutoff of ‘normal’. I fired him and went to a doctor who practiced functional medicine instead. Best decision I’ve made in a long, long time.

 

So, here I am. Obsessed with every morsel of food that goes in my mouth. Terrified of accidental gluten exposure. Wondering just how much more the vitiligo will spread. And anxious to start feeling something other than tired. Many of my symptoms have already disappeared, however, and when I start feeling dejected, I come to this community to read about how so many have made it through to the other side to lead happy and vibrant lives again. Such an AWESOME motivator!


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GottaSki Mentor

Welcome Michie!

 

No need to ever feel foolish here....you are not alone.

 

If you have not yet...make sure you check out the Newbie 101 thread.

 

We understand the frustration that comes with analyzing each morsel of food...it does get better...I promise.

 

Hang in there :)

GFinDC Veteran

Welcome to the forum Michie! :)

 

Congrats on going gluten-free.  Hopefully your symptoms will improve over the coming months.

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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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