Anybody have (or have had) the symptom of being too thin?

[voix]

I went through the stage where I would lose weight if I didn't continuously eat--meaning every hour eating big meals. Wondering if that was an early sign of gluten problems before anything else showed up?

(I brought this up on another thread but it was ot and buried in the other posts.)

[cardine45]

I guess technically I'm still being diagnosed, but I've always been incredibly thin with a huge appetite. I'm about 5'4" and consistently approximately 95 pounds.
I managed to get myself used to eating normal size meals because I didn't lose any weight by eating less, I just had to deal with always feeling hungry, and I'd rather be hungry and not be broke.
Before going gluten-free, I had a slightly noticeable gut, and since going gluten-free, my stomach is flat as a board. I've only been doing the diet for about 2 1/2 weeks, but I'm slightly less hungry and I'm hoping to gain some weight in more than just my stomach now.

[aklap]

[voix]

cardine -- yes, it is very expensive! People don't realize. Interesting that you are having such a noticeable difference already. I would like to hear if gf changes your appetite as time goes on.

Al -- yes, you did answer it last time I posted, but it was really mentioning that it could be a symptom of cd, hyperthyroid, or blood sugar issues, which could be interrelated with cd, too. That is why I mentioned above that I posed this question OT in another thread, so you wouldn't feel obligated to answer twice. Funny about absorption, I am having such a hard time spelling many words lately.

Not to be a pest, but I want to hear what other people who have experienced this have gone through, what extremes or symptoms, so I can compare with what I went through and narrow down what I think happened to me.

thx

[mrsppmrxky]

I used to be very thin many moons ago! My DD youngest one is very thin. I have small bones and have problems with stress fracture breaks. I have deteriorating spine, so I am sure I have Osteo.

Alas, for the last 13 years, I have packed on teh pounds.............I don't look like what the scales say (at least that is what everyone says to me) but the pounds have added up. At least I no longer freeze during the winter..............LOL...........of course menapause might be the match that keeps this old lady warmer than usual.
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[cruelshoes]

[Fifi]

I have the opposite problem. I can't lose weight. Anytime weight loss is a syptom of something, I unfortunately never get that one. I too was eating all the time and eliminating it almost as fast as it went in. From reading the threads on this site, I have found that I have probably had symptoms most of my life, but 4 months of diarrhea is what brought me to the Dr demanding an explanation. I can't tell you how many times he said he couldn't figure it out. Until I demanded an answer then they sent me to a GI. It is amazing the variety of symptoms and difference between everyones experience. No wonder it is so hard to diagnose. I would love to lose weight so my next appt I a m asking my Dr to check my thyroid.

[cardine45]

I definitely think it is a matter of malabsorption as to why some can't gain weight. I had doctors tell me a couple times that it didn't seem like I was actually digesting anything. (how is that to make you feel like you're throwing money away every time you put food in your mouth?)
I think this explanation might be of some help also. One of my co-workers mothers has CD and she was overweight pre-diagnosis. The most noticeable thing was that she basically looked like she was pregnant because she had such a pronounced gut. She lost the gut and a lot of weight after going gluten free and now she's thin as a rail (mostly due to other intolerances and a lack of much she can eat). The doctor explained to her that in some cases of CD, the body doesn't absorb anything, but it starts hanging onto the food because it's trying so hard to have something. It basically hangs onto useless fat. I don't know the entire medical description, but if you think about it, it makes sense that some bodies would try to hang onto something as reserves, but then rid itself of them as soon as it doesn't need it.

[voix]

It seems like there may be a difference with being thin from high metabolism or hyperthyroidism and from malabsorption from gluten problems.

I remember having my thighs burn like crazy climbing up a flight of stairs, which is happening again, even though I was very fit. I think that is more like there is not enough energy there than just having a high metabolism.

I think that generally I have a high metabolism and am naturally thin, but I was also extremely active and busy all day. Then my body went crazy and I had to eat constantly. I had to carry food with me every where I went and I ate about 6 large meals a day plus large snacks. I am sure I ate about 6000 calories a day. I was 5'8" and about 110. Normally, I was about 115, but ate about 1/3 of the amount. I don't think that I had any other symptoms at the time, no D or C, ever, and no bloating. But just eating so much every day took up a lot of time and it was scary to be without food because I would get dizzy and black out.

At the moment, I feel that there is malabsorption but I am not hungry like before. I also am inactive due to another illness, and in a way that has been a blessing because I have gained about 20 to 30 pounds, and I don't have to eat as much. I actually like it--except for the large tummy, which I hope will go away when I give up gluten.

It is good to hear about the varying symptoms so I can feel better about suffering for so long. It makes sense that it was hard to diagnose. I still feel though, that if the doctors didn't have a misplaced, smug attitude of "knowing" that I was anorexic but not admitting it, that I would have been diagnosed 15 years ago. I told them that I probably ate more than their entire family eats in a day, and begged them for help and invited them to follow me around, even to the bathroom, for as long as they wanted to see how much I eat and that I don't use unnatural means to get rid of the food, but once they understood that it was an unusual situation, they backed off--no help. No anorexic or bulimic that I ever knew would offer something like that. It was awful being accused of something that I didn't have when I desperately needed help for a real condition.

The internet is such a god send so patients are not kept in the dark, especially for hard to diagnose ailments like this one.

Thanks, guys.

[cardine45]

I totally agree that there is a difference between high metabolism, malabsorption, and other issues. I always thought it was high metabolism because all of the women in my family are very thin and eat a lot, just not nearly as much as I did. But then, any extra amount of activity started to make my muscles hurt for days on end, and I believe this was more a symptom of malabsorption.
I also dealt with doctors always thinking I was anorexic or bulimic. The second I would tell them how much I would eat, they automatically switched from anorexia to bulimia, and I was also tempted to tell them to follow me around, especially to the bathroom. When my teeth problems started, even my dentist started asking all kinds of questions about how often I would vomit. I told him that I disliked vomiting so much that I wouldn't dare drink too much alcohol, even when I was in college because I didn't want to put myself through it. I can pretty much guarantee none of them believed me, and I might have been diagnosed sooner had they been "thinking outside the box."

[voix]

Your message, it was so nice to read. I am just starting to face the trauma of the abuse of the medical profession (there were other things that I won't mention here). Reading your message sort of takes that trauma away. I wish I knew you back then, so I wouldn't have been alone with that fear of survival, fear of being away from home without enough to eat, fear of not being able to work and then dealing with that false judgment of having an eating disorder on top of it. What is really sad is that all these doctors, acquaintances "knowing" that I had this problem, but not one of them offered help for it--they even withheld help from the disease that they thought that I had, and for the one that I really had.

I was wondering about the teeth issues. My physical symptoms resurfaced probably in January. About that time, I noticed that my teeth were acting differently. I pick up stains really easy now. Bleaching lasts only until I have a cup of coffee or cocoa, which wasn't the case before. My dentist also found some beginnings of cavities between my teeth, although I flossed and brushed all the time. She gave me the paste that rebuilds enamel so that might help. But how do you know if there are problems due to gluten problems? What exactly does it look like?

[cardine45]

This is in no way a medical description of what happens, but basically because your body is not digesting nutrients, it starts eating away at itself and "falling apart." The teeth problems are for the same basic reason that CD can cause osteoporosis.
My teeth started getting really bad about a year ago, and dentists kept telling me that I needed to stop drinking so much pop. My answer was that I only drink 1-2 bottles of pop a week, and could that really cause that much decay. Their answer was to cut it out entirely. My most recent dentist actually started looking into other possible causes, and he even asked if I have any stomach issues and told me to go to the doctor about it. I already had my appointment set with the doctor at that point, but everything is too late. I just had a root canal done and a cavity filled 2 weeks ago, and I have 3 more root canals that need to be done and I lost track of how many additional cavities. None of the cavities are in the normal places--mostly between the teeth and on the front and back and the dentist said it is due to decalcification (which I've read is a symptom of CD). Currently, my teeth still look ok except for a little decalcification on some teeth near the front which just looks like white spots. They are definitely discolored but not horribly and I'm going to have professional whitening done once all of this is figured out.

[voix]

thanks for the info. Sounds similar. Mysterious dental problems regardless of good hygiene.

[Noatak]

You know, Colleen, my experience sounds identical to yours. I was eating so much food many people thought I was bulimic because my top, all time weight never got over 105 lbs. Plus, my upper body, especially my arms, were so thin, it was scary. How many times I questioned this to a doctor and was ignored or thought to be lying to cover up an eating disorder made me stay away from the doctors for 10 years. I also was an avid ice chewer and now that I have healed, I don't even use ice anymore, ever. I drink most liquids room temperature. My husband asked me about that the other day and wanted to know why all of a sudden, I no longer needed ice. When I told him, he believed me but even he still has trouble with all the perks of Celiac disease.

Now that I have been GF for 3 years, my weight has stabilized at 112 pounds but it is work! After menopause and healing from CD, I can't even begin to eat what I used to eat and it took me a while to wrap my head around what was a normal amount of food.

For the poster asking about the dental problems, you will know it is related to CD if you take care of your teeth but still have major problems. Mine include.....ridges on my teeth that you can feel with your fingernail. As I understand it, a person suffering form malnutrition will develop ridges in their fingernails but the ones that develop on your teeth are largely ignored by dentists who just have no clue. My teeth also stain very easily and hot drinks will make that worse. Coffee and tea will do the most damage but I'll be damned if I will give them up. The reason behind this is that a hot drink will open the pores of the tooth so the stain gets into the tooth and is harder to remove.

I also had a couple of my teeth come in without any enamel on them so they were yellow. I had them capped. There will be gum recession and bone loss, if you go long enough like I did without a diagnosis. On the bright side....I go to the dentist every 3 months for cleanings and care and use some recommended products. My teeth look better than many who don't have CD but I have spent some bucks on them. I consider them worth the money and effort, though. Very annoying, yes, but many things can be fixed today. I would, however, not recommend bleaching and your dentist will probably disagree with me. Bleaching affects the enamel and for those with CD and dental problems, it could create more problems down the road, like extreme sensitivity. Why take the gamble? I know ultra white teeth are in vogue but I will not take any more chances on my teeth than necessary. I have noticed that since going for cleanings every 3 months, my teeth have gotten brighter on their own, without putting crappy bleach on them. Also, by going more often, I seem to have avoided the cavity fairy.....that's one problem I have not had.

[aklap]

we have several threads on enamel defects.

http://forums.glutenfree.com/topic548.html

If you do a search, you'll find 'em

no time - gotta go...
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa