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I am a 41 year old female and I was diagnosed a little over 3 months ago, after going undiagnosed for a year while I went from 168lbs down to 130, and kept on going. I now weigh 84lbs and have been following my diet to a tee, I will put on a few lbs but then lose the weight I put on plus 2 to 3 more lbs! I was told if I followed my diet I would start to get better and gain weight..I dont know how much more I can lose before there is nothing left of me. I'm worried, has this happened to anyone else? I

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Are you sure your diet is 100% gluten-free? If you eat outside your home it likely isn’t.

Many celiacs have additional food intolerances, do you have issues with other foods like nightshades, soy, eggs, dairy, etc.?

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Hi jessie,

That sounds awful!  Yes, some people have had severe weight loss with celiac disease.  It can be hard to gain weight back also.  Your diet is the key to success  with celiac disease.  The immune system is very sensitive and reacts to very small amounts of gluten.  Also, some of us react to oats.  Dairy is a common problem for new gluten-free dieters.

Are you seeing a doctor about your condition?  You should be at this point with weight loss like that.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Welcome to the forum!  Hope we can direct you to answers here.

What do you include in your diet?  Do you include dairy or nightshades (tomatoes, potatoes,  peppers, eggplants)? Are you experiencing diarrhea or constipation?  Have you tried the Autoimmune Paleo Diet?  I found it very healing.

Have you been checked for vitamin and mineral deficiencies?  Checking for nutritional deficiencies is part of proper follow up care for Celiacs.

Before diagnosis, I became deficient in Thiamine (Vitamin B1) which caused a significant weight reduction without trying. I was also deficient in other vitamins and minerals.  My doctors did not recognize the symptoms of nutritional deficiencies.  I started taking  magnesium and Thiamine.  I saw improvements very quickly.  A B Complex supplement will help ensure you are getting sufficient B vitamins while your intestines are healing.  

Please discuss with your doctor or nutritionist about supplementing with vitamins and minerals.

"11 Silent Signs of a Thiamine Deficiency"


Edited by knitty kitty
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Jessie to me your post reads as a medical emergency. When you read these replies, immediately inform your doctor of what you just told us--call the office, schedule the next appointment asap, leave a message with the nurse, write them a message if they have an online portal, something. They need to know. They should've already at least talked to you about life-saving intervention, about gastric/feeding tube, and/or PPN, or TPN. I have to wonder if they haven't because they don't know. Are you having arrhythmia? Headaches? Blurred vision? Numbness? Shortness of breath? Please tell your doctor what you told us. Yes this happens to people, and they have to get help to recover.

Been at this 20 years. The usual. 🙃

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