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redjoy

By redjoy
in Coping with Celiac Disease

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redjoy Newbie
redjoy
Posted

Hi, for yrs I thought I was suffering w/IBS, tried treating it but not much changed. I just had a lung infection that started in March & went on 3 months. I have lost so much weight I look like skin & bones. I am also depressed, very tired & no energy. When I read about this diesease it seemed I had the same symptoms. I remember my Dr saying a long time ago he was going to test me for this but never got around to it. I go back to the lung Dr tommorrow he took another CS then I am going to ask my Dr to run blood work to see. I see you really have to watch what you eat, I ate cookies, ice cream bread etc & would run to the bathroom. A man that works w/my husband sd he has it & has to look at everything, sd it's even in shampoo which surprised me.

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drewsant Rookie
drewsant
Posted

I've been told all my life basically it was IBS. I went to specialists and everything, and have had tons of tests done, and ruled out everything but Celiac or allergies.

Finally 2 years ago, I went back to my GP, and talked with the Advanced Registered Nurse Practitioner, and told him that I would eat 3 bites of a sandwich or toast or crackers, and I'd be running to the bathroom. He mentioned Celiac, and said to do the gluten-free diet. That totally overwhelmed me. I also went to an allergist and found out I'm allergic to wheat, soy, chicken, fish, and tree nuts. The 1st 4 foods were my primary diet. If I eat just fresh fruits and veggies, and basic red meat, I don't have any symptoms at all.

I think that until just a few years ago, Drs. still thought Celiac was a really rare disease, but now they're coming around to it.

Crystalkd Contributor
Crystalkd
Posted

I'd been told that I had IBS, a spasming colon or that it was all in my head. I've been on the diet for three weeks. I'm still learning where the hidden gluten is but I'm doing a lot better.

blueeyedmanda Community Regular
blueeyedmanda
Posted

I for a long thought I had IBS from being a constant worrier and my job really stressed me out. It seems as if the symptoms between celiac and IBS are very similar. I am so glad it is Celiac I have and not IBS, I can control celiac. I eat gluten free. I honestly felt as if I was taking my life back when I went gluten free.

rsm Newbie
rsm
Posted

According to the doctors I had IBS, 25 years. After being gluten free for 3 months things are changing, stomach doesn't hurt, digestion is starting to return. I tried atkins a few years ago and noticed a definite change for the better. Once my daughter discovered the celiac connection it all clicked. We are both doing better gluten free.

gfmolly Contributor
gfmolly
Posted

I hope you are feeling better soon! I, too have been told that I have IBS and was told to try gluten-free and it made a world of difference! Many on the boards have trouble with dairy as well due to damaged small intestines, so you may want to try that as well. A month and a half into the diet and I have normal bm's instead of d everyday. I feel much more healthy and have energy. It's worth looking into.

Best wishes!

Terri

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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!
    • Sheila G.
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      Thank you for sending me this information 🙏🏻❤️✌️
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      By yellowstone · Posted

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