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Celiac Disease And Weight Loss


mrsvicky

Do you have weight loss issues too?  

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mrsvicky Newbie

I was diagnosed with celiac disease about 4 months ago after suffering with it for almost 3 years with no answers from any of the Dr's I seen. Finally went to Mayo clinic in Mn and got some answers and now that I have got on the gluten free diet I am only having maybe 1 or 2 attacks a month but Im still losing weight like crazy. Is this pretty common with the disease or something I need to be contacting my Dr about? For example: I have lost a pound and a half just since last night and I will go a week or two not losing anything and then bam I have lost 10lbs in 3 days. I weigh every morning first thing so I can keep track of my weight because it really bothers me how fast its coming off and I like to know exactly whats going on with my weight so I can tell the Dr if needed. Also I eat all the time so its not that I am not getting enough to eat. I am also not extremly active. I have 3 kids who are 4, 6, and 1 that I have to chase around but other then that I dont play any sports or do any regular exercise mostly cause I am scared it will just speed up the weight loss more. So what do you think is this normal or something else to be looked into? TIA


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jerseyangel Proficient

I was diagnosed with celiac disease about 4 months ago after suffering with it for almost 3 years with no answers from any of the Dr's I seen. Finally went to Mayo clinic in Mn and got some answers and now that I have got on the gluten free diet I am only having maybe 1 or 2 attacks a month but Im still losing weight like crazy. Is this pretty common with the disease or something I need to be contacting my Dr about? For example: I have lost a pound and a half just since last night and I will go a week or two not losing anything and then bam I have lost 10lbs in 3 days. I weigh every morning first thing so I can keep track of my weight because it really bothers me how fast its coming off and I like to know exactly whats going on with my weight so I can tell the Dr if needed. Also I eat all the time so its not that I am not getting enough to eat. I am also not extremly active. I have 3 kids who are 4, 6, and 1 that I have to chase around but other then that I dont play any sports or do any regular exercise mostly cause I am scared it will just speed up the weight loss more. So what do you think is this normal or something else to be looked into? TIA

Hi and welcome! It can take time to feel better and begin to absorb your foods correctly. Do you eat a fairly balanced diet? 10 pounds in 3 days is something that I would definitely ask my doctor about.

chasbari Apprentice

Lost scary weight very fast when I went gluten-free and then even more drastic when I went paleo.. the thing is the weight loss was body fat as I was gaining considerable strength back during that time. I lost 40 pounds in the first three months or so and most felt I didn't have any margin for weight loss in the first place. I knew differently though. I have never felt healthier, even though I still have endurance and recovery issues when I don't get enough protein. The body is busy healing and operating so the calories you need have to do double duty and if you have considerable gut damage you need to eat nutrients that the body can readily assimilate... simple foods as natural as can be. I found I couldn't handle raw veggies at first but now I prefer them as my gut can handle it. I am snacking on cauliflower and carrots presently. If I keep the protein intake high my appetite settles down. I thought I would pour on the raw fruits for a while but encountered way too many problems with bloating and discomfort. When I cut back and went with fruits that I don't consume the peel or rind... especially apples, strawberries and oranges.. (I would have a waxy residue chronically on my hand from peeling oranges and wondered if there was a gluten issue with that) sticking with bananas and fresh pineapple.. things settled down considerably. I took a trip to NYC and thought I had packed enough food for my two days.. lost ten pounds on that trip and am still trying to gain it back, so I sympathize with you.

mareahf Apprentice

I was diagnosed with celiac disease about 4 months ago after suffering with it for almost 3 years with no answers from any of the Dr's I seen. Finally went to Mayo clinic in Mn and got some answers and now that I have got on the gluten free diet I am only having maybe 1 or 2 attacks a month but Im still losing weight like crazy. Is this pretty common with the disease or something I need to be contacting my Dr about? For example: I have lost a pound and a half just since last night and I will go a week or two not losing anything and then bam I have lost 10lbs in 3 days. I weigh every morning first thing so I can keep track of my weight because it really bothers me how fast its coming off and I like to know exactly whats going on with my weight so I can tell the Dr if needed. Also I eat all the time so its not that I am not getting enough to eat. I am also not extremly active. I have 3 kids who are 4, 6, and 1 that I have to chase around but other then that I dont play any sports or do any regular exercise mostly cause I am scared it will just speed up the weight loss more. So what do you think is this normal or something else to be looked into? TIA

Yes, I lose weight quickly too when I accidently eat gluten. Normally when I get sick I will lose around 5 lbs and I am skinny already. I find it very dishearting because I feel like I am wasting away. But when I am healthy on my strick gluten-free diet my weight slowly comes back. Your body is not absorbing what it needs so it takes it from the reserve. I would see your doctor about the rapid weight loss, maybe they can give you vitamins so at least you get some nutrients. Hang in there and stick to your diet.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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