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Eating Disorders/weight Loss


sillyyak

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sillyyak Enthusiast

I was wondering if anyone has experienced weight loss with Celiac? I have been on the gluten free diet for 1 month now and am not gaining weight with the foods I am eating. I am concerned about become malnourished since the diet seems to be a high protein diet but not really a putting on the pounds diet. Has anyone experienced anorexia as a symptom of the celiac?

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mightymorg Rookie

I think many of us have experienced the *symptom* of anorexia, in that we can lose our appetite.

HOWEVER, please be aware that anorexia, the loss of appetite, is not the same as the eating disorder of anorexia nervosa....which is a mental illness that results in the obsession of weight loss and the refusal to eat. I had the eating disorder years ago, which I feel set off these GI symptoms, so I feel it's important for people to be able to distinguish between the two. ;)

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sillyyak Enthusiast

I guess my question is: has anyone ever experienced malnourishment from being on this diet? How does one prevent that in the context of anorexia being a symptom of celiac, apart from eating lots and lots?

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key Contributor

I used to struggle with anorexia in high school. Would just not eat for days, had wierd food things, like only eating one bowl of cereal for the whole day. Did that for three months. I never got severely thin and didn't lose my menstrual cycle ever, but my family definitely worried about me. I was the worst in high school for sure and it went on and off. Then college I was better, but still worried about getting fat and would cut calories and exercise alot. Then now, I have celiac. Been diagnosed for about 8 months. Anyway, I eat anything I want, but sometimes I skip a meal here and there. NOt breakfast or lunch, but supper(more of a light supper). I don't over eat ever, but do snack some. I am thinner then I was when I was trying to be thin. Now I think I don't try to be thin, that I just am. I have three kids and ever since my son was born six years ago, I have been eating everything or all the time and stay thin. I assume it is the celiac or I just am busy. I am also vegetarian though and gluten free and then I try to not eat alot of sweets, because I don't like getting alot of colds, etc. Being sick alot from too much sugar. I find being celiac and with all the restrictions, I have to really make myself eat sometimes. I get where I don't really care to eat when the food isn't that great or it is the same things I eat all the time. I just don't feel very tempted by food anymore. Anyway, I have realized I need to make a big effort to work on my food being more exciting and changing the variety, so I don't become malnourished. I need to be healthy for my family. I don't know if this is how you are feeling, but hopefully some of this has helped. I do feel that somewhere in my brain I want to stay thin, I don't want to be heavier then I am, but really my weight is very normal for my size. I am 5'2 and weigh 106lbs. I have a muscular build too though. Make sure you are making your meals appealing and not eating any gluten.

Good luck,

Monica

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tarnalberry Community Regular

Malnutrition can happen on this diet the same way it happens on other diets - by not choosing a wide enough selection of food (or enough food). The diet needn't be high in protein at all - fruits, vegetables, non gluten grains, beans and legumes all contain lots of carbohydrates, and there are plenty of fat sources out there! :-)

Not everyone gains weight on the diet, though, if you're underweight to start with, AND if you eat enough food, you should gain weight once your intestines start healing.

If you find you have no appetite, you may need to make sure you eat enough by checking the clock or the like for a while. There's a lot of psychology involved in hunger, sometimes, and if we get too busy to think about it, we may not eat. Additionally, and this is probably a big contributor to some celiacs cases, if food used to make you not feel well (even in subtle ways), your body may not really send out hunger cues.

So, make sure that you're getting enough food (whether that's lots and lots depends on what your definition of these things is - to some people 2500 calories a day is just right, for others, it's rather a lot). Make sure that you're getting a wide variety of food that provides the macronutrients (fat/carbs/protein) and micronutrients (vitamins/minerals) that you need. Consider taking a multivitamin, as a safety check. And - most importantly - make sure you are 100% gluten free, so that your intestines can heal and you can absorb the food you're eating. It may take a few months of being 100% gluten-free for you to really start putting the weight back on; you just gotta be patient.

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Rachel--24 Collaborator

I'm having alot of trouble gaining weight on the diet. I'm really restricted with what I can eat so that doesnt help either. I'm 5'2 and have been staying around 103 lbs. but today I'm only 99 lbs. after having a rough week...not sure if I was glutened or what. I ate the same amount of food...have actually been exceptionally hungry this week. I've definately never experienced anorexia where I wanted to be thin. I'm actually the opposite and have always wanted to gain weight...I'd rather be chubby then weigh what I'm at now. Its frusterating. The only time I didnt want to eat was when I was extremely sick before going gluten-free...during that time I had totally lost my appetite and had to force myself to eat.

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key Contributor

I too had lost my appetite while I was eating gluten. In fact, I never ate supper. Just wasn't hungry and then if I did, I would feel sick and not be able to go to sleep at night.

SO like someone said. I think the reason I don't overeat and forget to eat, is that I don't like to feel sick. I still have certain foods that seem to not agree with me totally. I can't stand having any kind of indigestion. I find that beans or some beans bother me. I am very limited in what I can eat too. So getting sick of what I eat is a huge factor. NOt wanting to eat unhealthy foods is another problem. I don't want to fill up on empty calories. For now I have decided to eat alot of yogurt(I love the Stonyfield Farms Fatfree lemon), not trying for fatfree, but it is just my favorite one. Also I eat almonds. I really like Kinnikinnick pizza crusts and love their English muffins toasted with Peanut butter. Also I make fruit smoothies with tofu, OJ, Flaxseed oil, frozen bananas and frozen strawberry's. I like baked potatoes with sour cream and green onions. I eat alot of corn tortillas and mexican foods, beans and brown rice, fruits and make soups. Giving up breads though and not eating meat won't make anyone gain weight I don't think, unless you ate all day long!

Rachel, I am sorry you can't gain weight and want to. I don't think that is horribly skinny, but if you don't feel healthy then that is what is important. THe way they make sizes now days though, I am sure you have a hard time even finding clothes to fit you. I wear a 0Petite and it is hard to find clothes to fit in womens. I think the celiac caused me to be much thinner. I used to be about 117 in college. I weigh about 10lbs less and I don't try at all, but I do try and eat healthy foods. More so I don't get sick all the time. Sorry you got gluttened. WHen I get gluten, the next day I am starving to death! LIke I haven't eaten in a month. I have to eat right then or I feel like passing out.

Well, hope you feel better soon.

Monica

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barry Newbie
I was wondering if anyone has experienced weight loss with Celiac? I have been on the gluten free diet for 1 month now and am not gaining weight with the foods I am eating. I am concerned about become malnourished since the diet seems to be a high protein diet but not really a putting on the pounds diet. Has anyone experienced anorexia as a symptom of the celiac?

I am also dealing with weight loss. I was diagnosed in Jan with biopsy of flattened cilia and have been on the gluten free diet since Jan - I was 170 when I started with the weight loss due to diareah and dehydration .I now weigh 115 pounds and am skin and bones. I have no muscle mass. my 32 pants now are too big

I eat voraciously anything i want and dont seem to gain any weight and if I get glutoned by err - i begin again with the runs. I also am trying to get off prednozone - which i have been on to keep the inflamatory natrure of my small intestines in check. . I am on 7.5 mg from 60 -

It has been trying and I also look foward to gaining strenght. After almost a year - i still have a hard time walking up stairs without pulling myself up.

Any suggestions or thoughts would be more than welcome

Regards,

Barry

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key Contributor

Barry,

Sorry you are still not gaining weight and not feeling well. How long have you been gluten free? HOpefully you will start feeling better and gaining weight soon. I am sure if you weighed that much before and only weigh 115lbs, that you don't feel very well. Make sure you are gluten free completely, so you can heal quickly. Checking all products. I am sure you have read that here before. I wish I had more suggestions about what to eat to fatten you up, but I think it will take some time to heal.

Good luck,

Monica

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barry Newbie
I am also dealing with weight loss. I was diagnosed in Jan with biopsy of flattened cilia and have been on the gluten free diet since Jan - I was 170 when I started with the weight loss due to diareah and dehydration .I now weigh 115 pounds and am skin and bones. I have no muscle mass. my 32 pants now are too big

I eat voraciously anything i want and dont seem to gain any weight and if I get glutoned by err - i begin again with the runs. I also am trying to get off prednozone - which i have been on to keep the inflamatory natrure of my small intestines in check. . I am on 7.5 mg from 60 -

It has been trying and I also look foward to gaining strenght. After almost a year - i still have a hard time walking up stairs without pulling myself up.

Any suggestions or thoughts would be more than welcome

Regards,

Barry

Thanks Monica for the reassuring words.

Being 100 without getting gluten is so hard -

I am aware of soy sauce being a hidden source.- what about wasabi and miso soup the fofu i heard is questionable when they take the bean and make it to the block of tofu ??/

any good exciting products that you found an d love

Regards,

Barry

I am weak - I can walk for miles but slowly and get tired - more so than i used to - i ran 4 miles a day - was extremely active

be well

are you part of our ny monthly dinner meetings.?

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key Contributor

Barry,

I don't know about the wasabi and miso soup. I am vegetarian, but don't eat these things. As far as tofu goes, it is gluten free. I use the block of it. It better be! HMMM! Why would it have gluten in it? Lachoy makes a gluten free soy sauce. It is very hard to stay gluten free. I still have to cook for 3 families that eat regular food and then my one son and I eat gluten free. My son can't have as much dairy as I can eat. I don't give him much at all.

No, I am not a part of the ny group. Sounds like fun. I need to join a support group though. THis group is wonderful. It is very active and helpful.

Give it time and do your best. SOon this too shall pass and you will have gained weight again. THere are alot of people here that were very sick and doing well now. Not all I suppose. Anyway, I don't eat out. I got sick too many times. THere is one restaurant here in town that I get a baked potatoe from. Pretty boring, but it is nice to go out once in a while.

GOodluck,

Monica

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tarnalberry Community Regular

Miso can be fermented on barley, so you have to be vary careful to find out what kind of miso you have.

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nikki-uk Enthusiast
I also am trying to get off prednozone - which i have been on to keep the inflamatory natrure of my small intestines in check. . I am on 7.5 mg from 60 -

It has been trying and I also look foward to gaining strenght. After almost a year - i still have a hard time walking up stairs without pulling myself up.

Any suggestions or thoughts would be more than welcome

Regards,

Barry

My husband was in a similar position,-

after 6 months gluten-free ,no improvement,still 120lbs and so very weak he could hardly stand up unaided.

My husband is now down to 5mg prednisolone from 40mg.

It's been 14 months since dx,and very slowly he is now beginning to put some weight back on,and his energies have raised.He too get's very tired though.

I guess for some,it's a very slow process,it's only recently for my husband that he's got his appetite back to near normal.Still a way to go :)

Good luck!

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sillyyak Enthusiast

I am actually losing a bit of weight since I have been on this diet and have decided to drink an Ensure - maybe two per day - one with breakfast and one with dinner. Each is about 350 calories and is gluten free

Other than that I am not sure what to do about the pretty rapid weight loss. It is scary to me because I do not want to look like skin and bones. Maybe I am just loosing muscle mass? I have started to lift weights because I need to strenghten my bones as well so maybe that will help

Has any one ever experienced rapid weight loss on this diet? I feel like I could be the poster child for Jenny Craig, or Atkins

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par18 Apprentice
Malnutrition can happen on this diet the same way it happens on other diets - by not choosing a wide enough selection of food (or enough food). The diet needn't be high in protein at all - fruits, vegetables, non gluten grains, beans and legumes all contain lots of carbohydrates, and there are plenty of fat sources out there! :-)

Not everyone gains weight on the diet, though, if you're underweight to start with, AND if you eat enough food, you should gain weight once your intestines start healing.

If you find you have no appetite, you may need to make sure you eat enough by checking the clock or the like for a while. There's a lot of psychology involved in hunger, sometimes, and if we get too busy to think about it, we may not eat. Additionally, and this is probably a big contributor to some celiacs cases, if food used to make you not feel well (even in subtle ways), your body may not really send out hunger cues.

So, make sure that you're getting enough food (whether that's lots and lots depends on what your definition of these things is - to some people 2500 calories a day is just right, for others, it's rather a lot). Make sure that you're getting a wide variety of food that provides the macronutrients (fat/carbs/protein) and micronutrients (vitamins/minerals) that you need. Consider taking a multivitamin, as a safety check. And - most importantly - make sure you are 100% gluten free, so that your intestines can heal and you can absorb the food you're eating. It may take a few months of being 100% gluten-free for you to really start putting the weight back on; you just gotta be patient.

I agree with this post exactly. I ate a lot of calories in the beginning with absolutely no appetite. You cannot gain weight if you don't eat. I spaced the meals out rather than try to eat a huge amount once or twice a day. The RD I went to put me on 3 meals and 2 snacks a day. I tried to balance the protein, carb,fruit etc. If you completely avoid all gluten and heal properly you should gain. I was put on a diet in the beginning consisting of the calorie intake of someone 30 pounds heavier than myself. It worked but not overnight. I did not miss a single meal for almost 2 months. After I put on about 10 pounds I started to become active which contributed to the return of my appetite. For the first time in my life I am at a healthy weight.( 6'1" 180 pounds).

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  • 4 weeks later...
mick66 Newbie
I am actually losing a bit of weight since I have been on this diet and have decided to drink an Ensure - maybe two per day - one with breakfast and one with dinner. Each is about 350 calories and is gluten free

Other than that I am not sure what to do about the pretty rapid weight loss. It is scary to me because I do not want to look like skin and bones. Maybe I am just loosing muscle mass? I have started to lift weights because I need to strenghten my bones as well so maybe that will help

Has any one ever experienced rapid weight loss on this diet? I feel like I could be the poster child for Jenny Craig, or Atkins

Hi, I'm new to the board, but not to the gluten-free diet. I have had celiac disease for about a year now. I know what you guys are going through with the weightloss, it's awful. I lost so much weight and was so malnourished that my gi doc put me in the hosp. on a picc line for 3 weeks, I gained 20 lbs. Within 2 weeks or so I lost most of it, but tried to stay at one weight to maintain so I wouldn't have to go in the hosp. again. I go to see him every month to get weighed and examined. I kept going down again even though I drink 2 Boost plus and whatever else I could eat. Six months later I was put back in the hosp. and they surgically put a port a cath in my body, on my left side over my chest, below my shoulder, I had to get nourishment this way, a feeding tube, just not directly in my gut, I already have pain from chronic pancreatitis, costochondritis, neuropathy, osteoporosis, basically I have pain everywhere. This diet is hard to gain weight, either that or it's the other dx's I have. I dread going every month cause I'm afraid he will send me to hosp. again. So far I've been gluten-free but I think recently i got glutened cause Iam more nauseus than ever. I have stayed the same weight for a couple of months now, I'm not sure how I'm doing it, but I totally get where you guys are coming from. I have read almost all the posts on weight loss with this disease but noone has mentioned going to a hosp. to get nourishment, even though I didn't like it, it did help.

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  • 2 weeks later...
bluejeangirl Contributor
Hi, I'm new to the board, but not to the gluten-free diet. I have had celiac disease for about a year now. I know what you guys are going through with the weightloss, it's awful. I lost so much weight and was so malnourished that my gi doc put me in the hosp. on a picc line for 3 weeks, I gained 20 lbs. Within 2 weeks or so I lost most of it, but tried to stay at one weight to maintain so I wouldn't have to go in the hosp. again. I go to see him every month to get weighed and examined. I kept going down again even though I drink 2 Boost plus and whatever else I could eat. Six months later I was put back in the hosp. and they surgically put a port a cath in my body, on my left side over my chest, below my shoulder, I had to get nourishment this way, a feeding tube, just not directly in my gut, I already have pain from chronic pancreatitis, costochondritis, neuropathy, osteoporosis, basically I have pain everywhere. This diet is hard to gain weight, either that or it's the other dx's I have. I dread going every month cause I'm afraid he will send me to hosp. again. So far I've been gluten-free but I think recently i got glutened cause Iam more nauseus than ever. I have stayed the same weight for a couple of months now, I'm not sure how I'm doing it, but I totally get where you guys are coming from. I have read almost all the posts on weight loss with this disease but noone has mentioned going to a hosp. to get nourishment, even though I didn't like it, it did help.
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bluejeangirl Contributor

Hi, I'm also new to the board and was trying to put mick66 last works in quote but screwed it up. Anyway sorry to hear about the hospital stays to get you to put the weight on. I think I'd put bricks in my pockets before that happened but I'm just joking because you have to somehow gain that weight. I went from 143 lbs to 118 over the period of a year though so it wasn't drastically lost. I'm 5'7". I just wasn't hungry and always felt boated with alot of gas and "constipation" so I never suspected celiac. I'm still not diagnosed BTW. I went off Gluten after reading up on my symptoms and buying some books. I knew my digestion wasn't well so I bought and read The Inflamation Syndrome and Dangerous Grains. I gave up eating gluten grains as a new years resolution. I'm feeling better then I have in a long time and the biggest improvement was my sleep and the aching in my body. I've gained 3 lbs and my appetite is better. I eat 3 to 4 small meals day whether I feel like it or not. I'm eating alot more veggies after reading the inflammation diet, which I feel will heal me faster. After eating this for 3 weeks I had my first (excuse me if this is offensive) normal bowel movement that was formed and strain-less in about 5 yrs. I was shopping on a Saturday morning with my husband in the grocery store and had to excuse myself to my husbands surprised and when I returned I could hardly contain my excitement in the middle of a store. hehe. Anyway I don't want to go on to long but the point I would like to make is in the beginning I feel it also important the what you eat not only gluten free but lots of fruit, veggies, and quality protein. I also went off dairy and soy. I didn't eat alot of beans because they are hard to digest. I ate rice corn and buckwheat pancakes and that was about the only grains. I'm now eating the gluten free breads and slowly eating the gluten free grain products. But I don't feel as good as I did when I was eating mostly fruits veggies and protein. I want to say more but don't want make this any longer.

I'm no expert only being on this for a month.

Gail

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  • 2 weeks later...
slpinsd Contributor

I was happy to find this post. I am really struggling with my weight too, you guys. For years, I have weighed about 107-110 lbs (Im 5' 7 1/2''), 125 was my most. In June, I all of a sudden gained weight and got up to 118 (I think this is from an increased hunger from gluten sens.) Then all of a sudden, i lost my appetite, and this horrible depression, anxiety, and panic hit (now i know about the severe B12 deficiency, almost nothing left). So then I was about 108. In December, I started trying to count my calories to gain weight. This is before I had the test results back by blood. For a week, I ate 2500 calories (more than usual). I lost 5 lbs in that week (does someone else think there is some malabsorption going on here?) and starting feeling really fatigued, like I would pass out if I went from laying to standing, and having D all the time, with really bad reflux. Then I was diagnosed with Gluten sens and I went gluten-free. 5-6 days later, the reflux was gone but I have lost another 5 lbs. Now I weigh 98 lbs and people think I am anorexic. Whoever said that that is where you think you need to lose weight so don't eat is right. I don't have and eating disorder. I want to gain, not lose weight, but yet my appetite is still sooooooooo supressed, i have to remind myself to eat. It is nice to hear that this may be a symptom of celiac. Ever since I was a child, I was at times aversive to food and I think my body just doesn't want to eat anymore since it subconsciously knows that it doesn't make me feel good. Does anyone know if there are any "hunger pills" out there to increase appetite???

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  • 3 months later...
Ursa Major Collaborator

A member with the nick eaw58 meant to post the following reply, but hit the 'report' button instead. So, I have copied her reply from the pm to the moderators, and I am pasting it here:

Report:

My 16 year old son was diagnosed with Celiac July '05. He's been exceptionally good as staying off gluten because he wants to grow and because he feels better. BUT he's not growing. He looks the same now as he did when he was 12. He has actually started growing in height these past couple of weeks. And so the drs don't think growth hormone is an issue. The dr's think he's really going into a growth spurt and finally puberty. His malnourishment has caused a delay in this. His bone growth x-ray indicates he could actually get to 5'9" if he could just grow. He is now 5'1' and weighs 87lbs. He will be 17 this month. He has weighed about 87 lbs now for about 5 months. His appetite is very low. I spent March through May making him eat as much as I possibly could no matter if it was junk food or not, just to get calories in him. He lost 2 lbs. I feel like giving up but of course, I could never do that. I think the drs feel an urgency because he only has a window of time before his growth ends. Like I said, he has no appetite and gets to a point where he just can't eat more and I don't mean at one sitting but for the day. He basically eats a total of 2 meals all day on a good day. His age also plays a huge part in this. He's 16. He doesn't want to look any different from his peers. Logically, we all know he obviously looks different from his peers but you can't reason with anyone that age! He doesn't want to be different, eat different, or act different. He is also extremely picky with what he will actually eat. It's got to look right as well as taste right. No way to guess what will accommodate either of those two. The drs are now thinking the majority of his eating problems are psychological and emotional. BUT over the past month a feeding tube or button has been mentioned. I am wondering if anyone out there has gone through anything like this.... a teenager diagnosed, totally off gluten and still not gaining weight, no appetite and feeling sick with the thought of making himself eat more than he already is, etc. As a parent I am so at a loss as to what to do. We’ve also tried medications with the side affect of weight gain but nothing happens. Any ideas? I actually think we’ve all thought through the obvious ideas. I guess I need some ideas or experiences out of the ordinary. Thanks for any help.

EAW58

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Jennas-auntie Apprentice

I found the following recently as my 5 year old niece also has gained almost no weight since being put on the diet (just over 1 year), and her parents are pretty sure they are 100% gluten-free-they are getting her tested next week for other things like additional food intolerances and such. This is a really interesting post, guys, thanks, and if anyone has other ideas let me know!

Anyhow, this is from an article by Dr. Murray on further treatments that might be used:

"Specific nutritional supplementation may be used to correct deficiency states. The most common are supplementation with iron, folate, calcium, and fat-soluble vitamins. Bone density should be measured in adults at or shortly after the time of diagnosis because osteopenic bone disease is common and may be profound in patients with newly diagnosed celiac disease. Patients with decreased axial bone density should be advised to obtain 1200 mg Ca and 100% of the recommended dietary allowance of vitamin D daily. Higher doses may be needed if vitamin D deficiency is detected. Secondary hyperparathyroidism may occur but tetany is rare. Intensive nutritional support and fluid replacement may be needed in extremely ill patients. Pancreatic enzyme supplementation may be useful in extremely malnourished patients and may accelerate weight gain (115). All patients should be followed up to ensure compliance with and response to the gluten-free diet. Cholesterol concentrations may rise and patients may gain excess weight with reversal of the malabsorption." (Open Original Shared Link)

Also it may be of interest that it seems, at least if I'm reading this right, that some people are slower responders to the diet than others-here they have a test to check if someone has celiac but is just responding slowly- (https://www.celiac.com/st_prod.html?p_prodid=877)

"French researchers have developed a test to determine whether a biopsy specimen reflects a normal course of celiac disease with a slow response to the diet, or the need for further testing because refractory sprue may be present. In paraffin wax, a specimen can be stained to determine whether or not the immune cells express CD8, a protein often found on intraepithelial lymphocytes in celiac disease. If CD8 is positive, the individual has celiac and is responding very slowly to the diet."

Anyhow, I hope they can figure out why my niece is not gaining any weight (she is actually tall for her age) but she's 5 1/2 and only weighs 34 pounds. I'm really, really suspicious that somehow, somewhere, she is getting glutened (maybe at restaurants, even though she gets the "gluten-free" stuff?-maybe preschool, though she's great about not eating anything without asking first). Maybe she has other intolerances? (They checked for lactose intolerance I know which was negative). She had a severe case too though, the pathologist said it was one of the worst cases he's seen in a 4 year old (they described her intestines as "smooth")...maybe she has longer to go to catch up because of this? If anyone else has any ideas let me know, since my SIL wants to go in there armed with information. My SIL and I have decided that we have to be our own advocates for this stuff, because they only found out about the celiac after putting heavy pressure on the docs that "we know something is wrong, and don't know what, but you're gonna find out, because this is NOT normal" and they ran a huge bunch of tests and that's when her labs came up borderline positive for it (her main and almost only symptoms were vomiting and failure to thrive). I'm also forwarding her the other information and ideas I find on this board, like what I've read in this thread. Thanks and best wishes to all of you!

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kbtoyssni Contributor
Anyhow, I hope they can figure out why my niece is not gaining any weight (she is actually tall for her age) but she's 5 1/2 and only weighs 34 pounds. I'm really, really suspicious that somehow, somewhere, she is getting glutened (maybe at restaurants, even though she gets the "gluten-free" stuff?-maybe preschool, though she's great about not eating anything without asking first). Maybe she has other intolerances? (They checked for lactose intolerance I know which was negative). She had a severe case too though, the pathologist said it was one of the worst cases he's seen in a 4 year old (they described her intestines as "smooth")...maybe she has longer to go to catch up because of this? If anyone else has any ideas let me know, since my SIL wants to go in there armed with information. My SIL and I have decided that we have to be our own advocates for this stuff, because they only found out about the celiac after putting heavy pressure on the docs that "we know something is wrong, and don't know what, but you're gonna find out, because this is NOT normal" and they ran a huge bunch of tests and that's when her labs came up borderline positive for it (her main and almost only symptoms were vomiting and failure to thrive). I'm also forwarding her the other information and ideas I find on this board, like what I've read in this thread. Thanks and best wishes to all of you!

Do they use playdough at preschool? That contains gluten. You might also want to look at what brand of crayons and paint she uses - some contain gluten although I don't know what brands. Is she sharing cups with other kids? If the other kid has eaten gluten and then touches her food or cup or the table near her, maybe she's picking it up that way.

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Jennas-auntie Apprentice
Do they use playdough at preschool? That contains gluten. You might also want to look at what brand of crayons and paint she uses - some contain gluten although I don't know what brands. Is she sharing cups with other kids? If the other kid has eaten gluten and then touches her food or cup or the table near her, maybe she's picking it up that way.

I know they've been keeping her away from the playdough, but I don't think the crayons and paint are something that's been considered-I'll check, you learn something new every day-Thanks!! :(

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  • 3 weeks later...
kbtoyssni Contributor
I know they've been keeping her away from the playdough, but I don't think the crayons and paint are something that's been considered-I'll check, you learn something new every day-Thanks!! :(

There's a list of gluten free school supplies in nini's newbie packet if you have that. You might want to check the bandaids they use, too. I was shocked to learn that not all bandaids are gluten-free! J&J Bandaids are gluten-free, Curel are not necessarily, can't remember about other brands off the top.

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jgross Newbie

I know it's been a while since anyone responded to this post and it seems to have gotten off the original topic a bit, but I'd like to throw my two cents in. I was diagnosed with celiac back in August and I have been struggling with an eating disorder ever since. For me, I think it's the guilt of the food costing so much more and all of the grief that it has caused my wife; she does a lot of the cooking for us and this made her have to completely overhaul her menu planning and recipies and grocery purchases, etc.

When I was diagnosed, I weighed 140-145 pounds - I'm 5' 10". Right now, I'm around 120-125; I've been as light as 118. Yes, I keep checking myself every couple of days. I will force myself to not eat or to eat smaller portions in order to 'make the food go further'. But sometimes, I binge eat for an hour or two, then I feel overly stuffed since my stomach has shrunken so much and I go back to not eating enough. Sometimes, I feel very cold or just kinda 'out of it', but I've learned how to deal with it for the most part.

I'm not sure if this was the original intention of this thread, but to whoever is going through similar feelings to mine, you're not alone. :(

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