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New Celiac Really Rough Start

Kquad

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Kquad Apprentice
Kquad
Posted

I was diagnosed about a week ago after more than 8 years of being told I had IBS. I have always been a very active ( most people call me hyperactive) person. Things began to spiral down about a year ago. I began to fatigue more easily and because of the growing fog in my head, my caffeine intake blossomed to more than 10 cups of coffee daily. My memory declined, to the point everyone was noticing. I was also eating about 4000 calories a day and always ravenous. I never gained an ounce. Then things really went south and the GI symptoms became much worse. About a month ago, I was stopped at a light , became disoriented or distracted ( I don't know what happened). I took of on red and was T-boned at about 55 mph. No one was hurt fortunately. My wife was about to take me in for Alzheimers testing ( I am 41). I went to a new MD and said I was falling apart and that this could not be IBS. My IgA came back positive.

I was relieved to have a diagnosis and am now on a strict diet for a week with 1 meal exception per another MD ( long story). I no longer need much coffee to be as alert, however, my body seems to be getting worse. 2 days ago I was feeling better, but today I could barely lift my arms and my face looked sunburned. The next door ER nurse ran over and poured propel down my throat, and it helped quite a bit. I still fill very heavy, but much better. For the first 4 days I ate very little, because of complete loss of appetite. The last few days I try to watch the clock so I eat. It is still only about 1/3 of my own intake, but I am forcing that. My labs came back normal as far as electrolytes and blood lab values, many were in the low normal, but all were normal. Has anyone else had a rough start like this? I was really scared tonight

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mushroom Proficient
mushroom
Posted

The low normal values of nutrients should be supplemented. These values represent what is in your blood stream, but not necessarily what is available to your cells. Most people don't feel better until their values are mid-range. This is especially true for B12, D, folate, magnesium.

What is this business about "except for one meal"? Does this mean you are supposed to eat one gluten meal a day or a week? I would like to hear that long story :rolleyes::blink: Was today the day after you had eaten that one meal by chance? What is propel? Is it something to increase gastrointestinal motility? And why did she give it to you? I would be interested.....

The reason you could eat 4000 calories a day and never gain an ounce was because you were not absorbing anything you ate. As your gut heals you may find yourself eating more again to make up for the lost nutrients but right now you are going through a major readjustment phase and your body is not quite sure what to do yet. And if the "except for one meal" involves gluten, then you are undoing all the good that eating gluten free is doing and really confusing your body. Post some more and give us the whole story. :D

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was relieved to have a diagnosis and am now on a strict diet for a week with 1 meal exception per another MD ( long story).

I agree with Mushroom. Please explain what you mean by this....

Kquad Apprentice
Kquad
Posted
  • Author

I agree with Mushroom. Please explain what you mean by this....

One MD wanted me to have a biopsy and sent me to a Gastro-enterologist and told me to go back on Gluten. I did for one meal and then got a call from gastroenterology to come right over. He told me I should go back on the diet, because he believed I have Celiac and all of false negatives with biopsies.

Kquad Apprentice
Kquad
Posted
  • Author

The low normal values of nutrients should be supplemented. These values represent what is in your blood stream, but not necessarily what is available to your cells. Most people don't feel better until their values are mid-range. This is especially true for B12, D, folate, magnesium.

What is this business about "except for one meal"? Does this mean you are supposed to eat one gluten meal a day or a week? I would like to hear that long story :rolleyes::blink: Was today the day after you had eaten that one meal by chance? What is propel? Is it something to increase gastrointestinal motility? And why did she give it to you? I would be interested.....

The reason you could eat 4000 calories a day and never gain an ounce was because you were not absorbing anything you ate. As your gut heals you may find yourself eating more again to make up for the lost nutrients but right now you are going through a major readjustment phase and your body is not quite sure what to do yet. And if the "except for one meal" involves gluten, then you are undoing all the good that eating gluten free is doing and really confusing your body. Post some more and give us the whole story. :D

Propel is an electrolyte water. ( Can't drink Gator-aid, royalty goes to University of Florida, and I went to Florida state :)). I ate the meal Monday after noon.

Jill0711 Rookie
Jill0711
Posted

First of all, you will not get better until you eliminate gluten completely. I found that when I went back on gluten for testing (per doctors orders) that my body got mad at me and went a little crazy and I ended up in the ER twice before I decided that I didn't care about the testing anymore. Second, even when you eliminate gluten completely, it takes the body some time to heal. As that is happening, you may go through gluten withdrawal, craving fats (in my case), and even having some really rough days. You definitely don't want to add dehydrated to that mix so make sure you are at least drinking enough fluids. After I eliminated gluten completely, within a few days, my appetite came back and I was starving :) Also, at the very least, you need to be taking a good multivitamin and probably add in some B12 and folate. When your body is not absorbing nutrients from food, these levels are low. My initial bloodwork before going gluten free, my levels were normal. Two months later, several were low so it takes time for the bloodwork to reflect what is going on in your body. If results are low normal, it doesn't take much to push them off the low end, especially if you aren't eating anything.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

One MD wanted me to have a biopsy and sent me to a Gastro-enterologist and told me to go back on Gluten. I did for one meal and then got a call from gastroenterology to come right over. He told me I should go back on the diet, because he believed I have Celiac and all of false negatives with biopsies.

Ok, that makes sense. That's not a long story at all. So you decided to skip the biopsy right? Just that one meal could have really messed up any progress you made. 1 week is not a very long time. Do be sure to check for all sources of cc--get new toaster, collender, cutting boards (if you have wood or plastic) and even chuck any old non-stick pans.

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    • Jane02
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