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VydorScope

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VydorScope Proficient

I wanted to write this up in hopes of saving someone else the suffering I went through. When I first joined this forum it was for my son who we learned had celiac disease. But over time I was myself getting sicker and sicker. This is my story of the road to dx and finally beginning recovery:

My major symptoms were uncontrollable shakes, vomiting, nausea, light headedness, blacking out, ever decreasing energy and steady weight gain regardless of how hard I pushed my self during work outs. Over time not only did all the symptoms get worse, but the got worse faster and faster. Add to that a general feel of unwellness that continued to get worse, and you get a broad idea.

I have been poked, prodded, tested, had things stuck in places that should never have things stuck in them, gallons (it is seems) of blood drawn, nuclear studies, and so on. I have been tested for anything (including celiac disease) that might remotely fit those symptoms with no success.

One incident in specific did really give me a clue. Well it happened more then once, but it was the same every time. I would get the shakes, and while I did not black out it was like I was running on pure auto pilot. I would with out thinking (or remembering it later) rush to the pantry, grab the canister of Sunmaid Raisons and start eating. After I had gotten through about 1/3rd of a canister I would be back in control and the shakes would stop.

Eventually I bought a glucose meter and discovered something somewhat scary. My blood sugar was completely out of control. And for those that do not know, out of control blood sugar can kill you if its bad enough and mine was getting there.

Well the doctors called it hypoglycemia and sent me packing with a useless hand out that said basically


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blueeyedmanda Community Regular

Wow, I am glad you were able to find this out. It really is an eye-opener. I hope it does help some people who are also suffering and really do not know what direction to go in.

bluejeangirl Contributor

Vincent, I'm so glad you found out how to eat. I was abit worried for you at one point when you said you where eating the high glycemic fruits like bananas and something else that I thought was alittle to high in sugar. I know I eat more fat and protein then most people but it's what makes me feel good. The trouble is I don't always feel hungry when I get hungry and then it's too late. So I just stick to scheduled meals usually every three to four hrs. and eat something before I go to bed. I hope you can stave off the diabeties diagnoses for a good long time.

Thanks for the post I'm sure it'll help people.

Gail

Nancym Enthusiast

Hey! Glad to hear you're figuring this out. I just bought a glucose meter too. I had some really low readings like 58. But they might have been mistakes, although I might have fasting hypoglycemia. You probably had reactive hypoglycemia, I'm guessing. Anyway, I don't think mine is too severe, I just get very, very sleepy without the shakes.

I find when I eat like you do, lots of fat/fiber, followed by protein, and finally followed by a few carbs, I feel pretty darned good!

VydorScope Proficient
Hey! Glad to hear you're figuring this out. I just bought a glucose meter too. I had some really low readings like 58. But they might have been mistakes, although I might have fasting hypoglycemia. You probably had reactive hypoglycemia, I'm guessing. Anyway, I don't think mine is too severe, I just get very, very sleepy without the shakes.

I find when I eat like you do, lots of fat/fiber, followed by protein, and finally followed by a few carbs, I feel pretty darned good!

Nancy, try this test....

First you need to fast for at least 8 hours. It easiest to do this while you sleep. :)

Next test your blood. A normal reading at this point is 70-110. (if you reading is OVER 115 or 120, stop the test and get an appointment with an endocritologist or how ever its spelled to get the Oral Glucose Tolerance test asap)

Next eat a meal that is sugary, but not something out of hand for a normal person. Bowel of cereal and glass of juice would work fine. Note the time you START the meal.

Once you have eaten , do not eat or drink again till your done with this test, else you will have to start over. Test your blood every hour for the next 4 or so hours

At 1 hour your reading should be the highest, do not worry about this number. Anything less then say 140 or 150 would be reasonable. The numbers you get in hours 2 and 3 will likely be above 100, but less then 140. If you ever get a REALLY high reading like 190 or 200, you need to stop the test and see a doc like I mentioned after your fasting score. DO THIS ASAP if not sooner.

At hour 4 if your score is ABOVE 80, retest in 30 mins. If it still is about 80 , try one more test in another 30 mins.

If you score EVER falls below 70 during this test STOP THE TEST AND EAT, you have hypoglycemia.

If you do, you like me need to be VERY VERY careful with your diet. You might not be as bad as me YET but this is a issue that gets worse with time, and will eventually lead to diabetes. You do not want that. There is plenty of indication in the medical journals that proper diet and exercise will help prevent that.

IF you are hypo, keep that meter handy you will use it for two things....

First once or twice a month check your fasting blood sugar. That is an indication of how well you are doing in your diet. If the number is stable (ie not changing much, some variation is normal) in the 70-110 range, it is one indication you are doing fine. If it is climbing, then you need to revisit your diet choices.

Also use it to track how you body reacts to various foods you eat until you get good at knowing what works. After a while you will not need to do this anymore because you will have your diet worked out, and you will get good at knowing what your blood sugar is doing based on how you feel.

If you are hypo you need a diet based on GOOD fats (ie from plants and animals, not from labs). This summary from a very long article is a good place to start with understanding good fat. (ie margin is bad fat, butter is good)

In summary, our choice of fats and oils is one of extreme importance. Most people, especially infants and growing children, benefit from more fat in the diet rather than less. But the fats we eat must be chosen with care. Avoid all processed foods containing newfangled hydrogenated fats and polyunsaturated oils. Instead, use traditional vegetable oils like extra virgin olive oil and small amounts of unrefined flax seed oil. Acquaint yourself with the merits of coconut oil for baking and with animal fats for occasional frying. Eat egg yolks and other animal fats with the proteins to which they are attached. And, finally, use as much good quality butter as you like, with the happy assurance that it is a wholesome

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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