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I'm So Confused And Frustrated!

ladybugpumpkin

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ladybugpumpkin Contributor
ladybugpumpkin
Posted

Okay....so here is my dilemma. After getting the enterolab test last year, here were the official results...

Fecal Antigliadin IgA 17

Fecal Antitissue Transglutaminase IgA 9 Units

Quantitative Microscopic Fecal Fat Score 87 Units

Fecal anti-casein (cow

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VioletBlue Contributor
VioletBlue
Posted

I'm told it can take anywhere from six months to a year or more to get all the gluten out of your system. On top of that, Celiacs are more likely to have other food intolerances and allergies which can cause similar symptoms. Every instance of glutening can take weeks in my case to get over. So it may well be that every time you eat gluten you re-set the clock so to speak on feeling better. Then there are issues of cross contamination in the food utensils, appliances and on work surfaces where food is prepared. So even when you think you're not eating gluten, you're getting gluten in your system from cross contamination and again resetting the clock on recovery. Then there are vitamin and mineral deficiencies that result from Celiac Disease. The side effects of anemia and pernicious anemia can be devastating, and more so the longer it goes on.

Buy or borrow a copy of Peter Green's book Celiacs Disease: The Hidden Epidemic. Read the stories here on the site. Listen to the advice and ask all the questions you want.

A gluten free diet isn't a quick fix for Celiac Disease because there are so many other components to it. But a gluten free diet is the only cure. It takes time though and a strict adherence to gluten free eating.

Violet

ladybugpumpkin Contributor
ladybugpumpkin
Posted
  • Author

Thanks! I understand how I can be getting sick even when I don't "think" i'm getting any gluten. And I understand that I'm probably getting it without realizing it sometimes due to CC and stuff like that. But I still can't explain why sometimes I DON'T get sick when it is pretty obvious that I should. I guess that's the part that has me the most confused. I mean, anyone with a gluten sensitivity/intolerance, should have been setting up camp in the bathroom after eating Papa Johns...right?

gfpaperdoll Rookie
gfpaperdoll
Posted

wellll, you are double DQ1 & I know one thing about that (I am double DQ1) is that it is possible to get damage somewhere else before it affects the gut or at least that you feel in the gut. Also, if your intestines are damaged it might just go into panic mode & slid that pizza on out :o

DQ1 people get a lot of neurological symptoms. Did you get a headache, feel down, get depressed, get angry????

I also react more to barley & oats that to wheat so there are a lot of things that come into the equation. But if you think that you are not getting damage - you are wrong. Had an MRI lately? You can get those spots in the brain that resemble MS. Or you could just keep eating the occasional gluten and get cancer. As the protection from cancer for us is the gluten-free diet & getting all the inflammation out of your system.

I hope that you do not make the mistake that my family has made & think that it is JUST Dq1 & not the dreaded (ha) DQ2 or DQ8 that they will be okay eating gluten. Well the 9 year old gd is now fat & the enamel is worn off her teeth & in the past she has had walking pneumonia, asthma, breathing treatments for both of those, itchy - itchy rashes, constipation... I know that there are a lot of people eating the SAD that do not know that they have this condition, but I also see children dying of cancer & getting diabetes...

VioletBlue Contributor
VioletBlue
Posted

Diarrhea is not my most obvious symptom of accidental glutening. Neurological emotional/psychological, motor problems and GERD are how it's most likely to show up for me. Not everyone reacts exactly the same way to gluten, and your reactions can change as the damage progresses. Your reaction may depend on how much gluten you get, what kind of gluten and what ever else you eat with it that you may be sensitive or allergic to.

You have about 20 feet of small intestine in three folds. The uppermost fold is damaged first they say, leaving the remaining two thirds of the intestine to function. But as time and the damage progresses more and more of the intestine becomes involved and your symptoms will probably get worse. Usually the first group of ville to be damaged process lactose, but in some it's fats or vitamins and minerals. So if you eat gluten in combination with something that has a high lactose content you may make the reaction worse, or you may have a problem with high fat content.

The risk of intestinal cancer is 50% higher for Celiacs who consume gluten. I believe I also read that it takes five years of a gluten free diet for that risk to return to what is normal for the general population. I'm 45. I want to live to be 50 so I don't touch gluten no matter what.

Violet

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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