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Dealing With Fatigue And Lack Of Stamina


jymles

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kabowman Explorer

I take multi vitamins (don't care for the liquid), plus 500 C, 1000 calcium, and the B vitamin-complex/complete.

Blood sugar is a problem but I keep that pretty controlled because of a yeast intolerance too which elimates almost everything sweet and I eat protein with most carbs for balance. Discussed with dietition.

I have been gluten-free since July 2004, soy, peanut, and corn free since August 2004, almond and garbonzo bean free since September 2004, yeast free since October 2004, and lactose/casein and MSG free for more than 5 years

My thyroid has been checked within the last 6 months. My iron, last we checked about 6 months ago was OK too...and the doc said I don't have all the points for (sp) fibremyalga.

I have NOT been formerly dx with celiac disease. I was gluten-free for several months before my doc checked and by then (not before) I knew there was a danger of no visible signs for a positive ID and I told the docs that I REFUSED to go back in order for a positive ID and no definitive signs of damage were found.

-Kate


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mela14 Enthusiast

Hi Kate,

Boy you sound a lot like me with all the intolerances. How do you do it? I am still having a hard time and often find myself eating something I think is safe and then reacting to it. Vitamins are a little problematic for me as they irritate the heck out of my gut. I just started cutting my vitamins in quarters. Let's see how that works for me. All my blood tests were good....not showing any vit deficiencies.

I am going to columbia presbyterian tomorrow for a consult ....just in case someone is missing something. I know I will NOT go back on gluten for an endoscopy so let's see what they have to say about that. I thought I was doing a good job watching the gluten but test results yesterday showed a number of 35.....still high but at least nowhere near 66 from 4 months ago.

My dr also ran other tests and of course soooooo many more intolerances...ones that I have been reacting to. What do you eat? I am having a hard time with variety and often find myself craving something sweet. I have given into raisins, and some fruits and apple sauce but now...the Candida is in flare! back on a round of Nystatin to help me along. With my immune deficiencies it is hard to keep things in check.

OH WELL................more chicken tonght for dinner!

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    • Samanthaeileen1
      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? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      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.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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