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NotMollyRingwald added a blog entry in NotMollyRingwald's BlogDear Future Amy[color=rgb(40,40,40)][font=helvetica]
Dear Future Amy,
I know you are doubting your intolerance/sensitivity to gluten. I'm sure, now that time has gone on, you're starting to doubt the trouble it has caused you. You have forgotten how very miserable your gluten challenge was, and have started allowing the if's and the but's and the maybe's into your mind. So, I'm writing to you now, to remind you...read this and think back. Remember. Accept. And for the love of God, put down the Vanilla Porter, or the flat bread, or the Oreo, it's[b] not [/b]worth it!!!
* Bloating - feeling 6 mo pregnant, all the time. Remember how miserable you felt in your suits and jeans!
* Difficulty losing weight/changing body composition despite doing "all the right things"
* Constipation - remember how excited you were to have a normal BM the first week after going gluten free?? Remember the thin BMs, the rabbit pellets, and then the days full of "D" after running or "eating something wrong."
* Fog head - think of work, how hard it was to concentrate on writing disciplinary action letters, how long it took. Then think of home, how mentally tough it was to put together a simple grocery list (only to forget the important things, e.g. milk)
* Unusual fatigue - suddenly unable to make it through workouts, like suddenly couldn't finish a set from failure/shaking/weakness but your muscles didn't feel taxed...remember how much you used to love lifting and running?
* Dry skin/eyes - think of the horrible cracks on your hands, how much money was spent on magic lotions and potions that never worked, think about how red your eyes always were, how you could never wear contacts, how you rarely had tears, even when crying
* Short tempered/irritable - how many times did you lose your temper with Maddox when he didn't deserve it? How many times did you act irrationally with Boyd? Think of the times at work when you felt unreasonably ticked you off and how pissy and later embarrassed you felt about it.
* Periods of depression, constant mild anxiety. Think about how stuck you felt when you were so overwhelmed you didn't know what to do, so you did nothing...remember how anxious you always felt about your "to-do" list at work and at home, and how you felt out of control and like things were stacking up, over your head, with no end in sight.
* Think about your gums, the recession and reduced enamel, the horrible tooth sensitivity
* HELLO, fibromyalgia!
* "Irritable bowel syndrome"
* Psoriasis of the scalp & the odd bumps on your neck and behind your ears
* Think of your three angels in Heaven
Now, remember the gluten challenge; five weeks of hell. Think about how, within a week, your brain was worthless. How you washed your hair with shaving cream, and wore flip flops to work by accident. How you gained 11 lbs in 3 weeks...even while barely eating. Remember how pensive you were to eat at all? Remember the last few weeks, when your head hurt so bad you couldn't think straight and no pain medicine worked. Remember the fire alarm!! How everyone at work was worried. How nauseous you felt after every meal... Think back to that night you slept from after work to bedtime, and then went right back to bed, and the Sunday when your stomach hurt and head hurt so bad you slept from right after church till dinner, and was back in bed after Maddox was asleep. Remember how bad your muscles & joints hurt! Think of how your jaw felt permanently clenched and your neck muscles were stressed.
If all that doesn't bring you back to reality, remember the sweet voice of 3 year old Maddox, "Mommy, you not sick anymore?" He knew something was wrong and he was worried. Remember how sad and defeated you felt when you you couldn't muster the energy to play power rangers with him or push him on the swing for more than a couple minutes. Think about Boyd. About how strained your relationship became... And how often you thought about all this and prayed for the day when you could banish gluten forever.
Stop questioning yourself. Whether Celiac, or NCGI, or only gluten sensitive, your body does not do well when gluten is in it. THE END.
It's not worth the flavor or the texture. You will regret it. So put it down, whatever it is you are considering eating/drinking that you know will make you sick. It's not worth it!
Past, sick as a dog & miserable, Amy [/font][/color]
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NotMollyRingwald added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBiopsy Results Inconclusive; Early Celiac, Sibo, Something Else?Just got the word from my GI – the biopsy results are inconclusive. I don’t have a copy of the report yet, but my doc explained there was a small amount of damage to my villi. However, it was not full villus atrophy as would be expected from a full blown Celiac. He believes the damage could be from “early Celiac disease” or it could be the result of a severe gastrointestinal virus (I had a nasty stomach bug last Christmas). Given my significant positive improvement on a gluten-free diet, he leans towards the early Celiac theory, but doesn’t want to official diagnose that at this point as my blood work (tTg IgA) was negative (8 with 1-10 being normal). He doesn’t want to exclude Celiac at this point either, as I was 6 weeks gluten-free at the time of the blood work and it’s possible my tTg would have been higher before going gluten-free. ARRRRRRGH. Anyone have a time machine that I could use to go back to February and see a doctor BEFORE going gluten-free?? *Sigh*
So, we also discussed options. 1) take the gene test and hope it is negative (so we could positively rule out Celiac), 2) treat as Celiac/NCGI and go along my merry way on the gluten-free diet (complete with a referral to the hospital dietician), 3) go back to eating gluten for EIGHT MORE WEEKS and run a full panel of bloodwork again in August.
So here’s the thing. If I have Celiac, I want my son to be tested. When it comes down to it, the diagnosis/ruling out of Celiac is only important to me for that reason. I already know gluten is poison to my system…the gluten challenge proved that beyond a doubt. I can’t go through another 2 weeks (much less *8* weeks) of gluten hell. I just can’t do it. So, I opted for #1 & #2. Hopefully, the gene test is negative & Celiac is ruled out. If it’s positive, well, I guess I cross that bridge when/if I come to it. (Sidenote: if this is what “early” Celiac is like, I cannot imagine the misery so many of you endured when eating gluten!!!)
So, long story even longer, I’m wondering about the possibility of the villi damage being done by a stomach virus/SIBO/lingering stomach virus. The GI originally planned to take a sample to test for SIBO during the EGD, but wasn't able to (the only tube they had for the procedure is made of latex, I'm allergic). He mentioned a breath test as an alternative, but doesn't feel like that is a strong option at this point. Thoughts? Any insight?
Once again, I am so appreciative of you all - the opinion of those who have been- there-done-that- and-should-have-a-medical-degree-from-the-experience is HIGHLY valued by this girl!!
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