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Blood Test Done Yesterday...Egd Thursday.

frustratedandtired

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frustratedandtired Rookie
frustratedandtired
Posted

I posted once before thinking Celiac Disease was a possibility. I saw my new GI dr and have to say was very impressed with him and that he actually listened to what I had to say. He ordered the blood test and scheduled the biopsy which is Thursday. It was hard for him to ignore my symptoms given the fact when i was in his office the right side of my face was swollen from a sore in my mouth, my hands were swollen from arthritis and i was basicly a wreck. I wait till I just cant put off going any longer before I even go to the dr. Its so frustrating. What I didn't like was that he said I may need another colonoscopy when I just had one a year ago. He requested the results but said if no biopsy was done then I would need another one. He said Crohn's is still a possibility. He gave me a few prescriptions but the only one I am taking is the one for the heartburn. I dont want anything to effect the test results. I hope when I go in on Thursday that the results from the blood work will be in but I think that would be wishfull thinking.

If anyone know's of any questions I should ask, please let me know. I do feel my problems are due to Celiac more than Crohns.

I do have a couple questions. They may have nothing to due with my GI issues but feel it wouldn't hurt to check with you guys. 1) Do you sweat easily? Occationally I will wake up in the middle of the night with the neck of my shirt soaked and get hot very easily when I do most activities. 2) I have a rash on my ankles. Always noticable when I get out of the shower but fades as the day goes on most of the time. Anyone else get this rash? It's like pink/red "spots".

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      - Aretaeus Cappadocia replied to yellowstone's topic in Coping with Celiac Disease
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      Hypoglycemia, ketones in urine and weight lost. I need advice.

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      Hypoglycemia, ketones in urine and weight lost. I need advice.

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    • Aretaeus Cappadocia
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By Aretaeus Cappadocia · Posted

      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
    • knitty kitty
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By knitty kitty · Posted

      @yellowstone, You poor thing!  I'm not a medical doctor, but it sounds like "Refeeding Syndrome".   I suggest you seek medical attention.   Refeeding Syndrome occurs when your body doesn't have enough of the necessary vitamins, especially Thiamine, to turn sugars (from the fruit, juice, and honey) to turn provide energy.   This can occur in Malabsorption due to Celiac Disease.  Malabsorption prevents the absorption of B vitamins, especially Thiamine. The B vitamins and Thiamine cannot be stored long in the body.  When you run out of Thiamine, your body burns fat for energy which produces the Ketones, hence your weight loss. With medical attention, Thiamine and other B vitamins need to be replaced before giving any more sugars.  Doctors can give you an IV containing B vitamins including Thiamine, called a "banana bag".  Riboflavin  Vitamin B2 causes the yellow color.   Doctors can also monitor your electrolytes which can become unbalanced and cause further serious health issues. I've experienced Refeeding Syndrome.  It's very scary.  Health can deteriorate quickly in Refeeding Syndrome.  It's correctable, but complicated.   I strongly urge you to get professional medical attention as soon as possible.   Our prayers are with you! https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome Thiamine Deficiency in Self-Induced Refeeding Syndrome, an Undetected and Potentially Lethal Condition https://pmc.ncbi.nlm.nih.gov/articles/PMC4295429/ Keep us posted on your progress!
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      By yellowstone · Posted

      Due to malabsorption, I have hypoglycemia and I excrete ketones in my urine. I am losing a lot of weight. I don’t know what to do — I drink juice, eat fruit, take honey, but I don’t notice much improvement. Any advice?
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