Anyone Gain Weight Before Losing Weight

[slpinsd]

Before diagnosed w/ gluten intol. I weighed 107 for a long time. All of a sudden, I went up to 115 pounds (gaining weight for me has always been extremely hard so this is significant). It stayed there for about 2 weeks and then I started suddenly losing- down to 98 in 6 months. Since going gluten-free I've gained 3lbs. Just wondering- did anyone else first gain and then lose weight before diagnosis?

[Rusla]

I gained tons of weight before diagnosis now, since the diagnosis I have lost 35 lbs and keep losing. I hope to get back to a normal weight this year.

[Rachel--24]

YES!

I was always small...wanted to gain weight all my life. All of a sudden during the 6 months before symptoms started I was gaining! It was great and I liked my new body...I finally had one! I was around 117-120. After I started having symptoms I gained even more. I got up to 128 and was feeling bloated and too big. I also had Graves Disease and it didnt make sense that I was gaining with an overactive thyroid....this had never happened before. All of my symptoms were blamed on the Graves Disease so the doctors nuked my thyroid making me Hypothyroid. I stayed sick and started losing all the weight and then some....all the way down to 94 lbs.

I was thinking it was bizzare to be losing that much weight while Hypothyroid. I spent another year and a half adjusting thyroid meds trying to feel normal and gain weight when it was really gluten all along.

I'm now at about 100 lbs....just found out I'm casein intolerant so hopefully eliminating that will allow me to put on more weight. I wasnt feeling like I was healing at all the past year...still was losing weight for no reason and really struggling to not go under 100 again.

[slpinsd]

I gained tons of weight before diagnosis now, since the diagnosis I have lost 35 lbs and keep losing. I hope to get back to a normal weight this year.

rusla- so it seems like the diet is working for you? That's good. You are losing pounds that you gained, right? I'm glad at least that I seem to have stopped losing weight since starting the diet. During the time you gained weight, did you feel hungrier and thus ate more?

YES!

I was always small...wanted to gain weight all my life. All of a sudden during the 6 months before symptoms started I was gaining! It was great and I liked my new body...I finally had one! I was around 117-120. After I started having symptoms I gained even more. I got up to 128 and was feeling bloated and too big. I also had Graves Disease and it didnt make sense that I was gaining with an overactive thyroid....this had never happened before. All of my symptoms were blamed on the Graves Disease so the doctors nuked my thyroid making me Hypothyroid. I stayed sick and started losing all the weight and then some....all the way down to 94 lbs.

I was thinking it was bizzare to be losing that much weight while Hypothyroid. I spent another year and a half adjusting thyroid meds trying to feel normal and gain weight when it was really gluten all along.

I'm now at about 100 lbs....just found out I'm casein intolerant so hopefully eliminating that will allow me to put on more weight. I wasnt feeling like I was healing at all the past year...still was losing weight for no reason and really struggling to not go under 100 again.

Rachel- so then the gluten made you gain weight? do you think that after awile it got so bad that you started losing weight? or was it the thyroid meds/graves that caused that?

[Rusla]

I was hungry and ate many times a day,but it was not all carbs. I did crave carbs but much of the time I ate fruit and vegetables and still gained weight.. I do not crave carbs that much anymore. That is one reason they were busy thinking I was not Celiac I was "just too fat." They figured I ate small towns which I didn't. The losing weight makes me very happy because the weight gain was the most physically and emotionally destroying problem. People don't ever look at why a person could be fat, just that they are fat or thin. This disease is very debilitating in many ways. The pain, the fatigue, the "D", the gain or losing weight not just takes a physical told but a very emotional toll. They truly need to take all of that into account along with all the other problems involved.

[Rachel--24]

Rachel- so then the gluten made you gain weight? do you think that after awile it got so bad that you started losing weight? or was it the thyroid meds/graves that caused that?

I think the gluten was causing me problems before I actually "felt" it happening. I was gaining weight but didnt really think of it as bloating...cuz at the time I didnt even know what bloated was. I was just happy to be gaining weight...I got teased because it was all in my stomach.

I just kept gaining and then I *was* sick and had to go out on disability. This is when I got up to 128. I was getting concerned at that point cuz I didnt feel good and some nights my stomach looked huge. My partner even accused me of being pregnant. I dont know of any pregnant people who can be flat in the morning and look 7 months pregnant before bed. At the time I assumed it was thyroid related even though it didnt make sense.

About a year later the weight just started falling off pretty quickly and by then I had undigested food coming out. I had been on disability the entire time cuz no one could figure out what was going on. Next thing I knew I was at 94 and was really scared...thought I was dying. Since going gluten-free I've gotten up to 105 but I cant keep it there...I go up and down. Most of my life I weighed around 100-105 anyways but now it just doesnt look healthy to me. Maybe I wasnt suppossed to ever be 120 but I liked it when I was. The doctors say my weight is fine now. It wasnt when I was 94 but now they say I look healthy and normal.

Sometimes I wonder if this disease was always there because my whole life I ate more than guys twice my size. I could never gain weight. I ate 2 of everything. If I went to McDonalds it was 2 big-macs, a cheeseburger, nuggets and large fries and I'd still be hungry for more. I never got full.

[slpinsd]

Exactly- me too Rachel. I have been a waif my whole life. I remember in High School at McDonalds I would eat 3 cheeseburgers and fries every day! It makes me wonder how long I've had this *gluten* problem. At 5'8'' I only ever weighed 125 when I was about 20 (I'm 31), and since then I had shrunk to 98 lbs. And they tell me they cannot *confirm* that I have Celiac- so I'm still baffled. Right before everything got really bad about 9 months ago, is when I gained for the first time in my life and was soooo happy. But yes- it was all in my stomach! And then it quickly went bye-bye.

[Rachel--24]

I guess our stories are pretty similar.

I think I'm the one who's more skeptical about Celiac since I dont carry a main gene....it keeps me wondering. The doctors are all telling me thats what it is even though it cant be confirmed...but I'm like "I dont have the gene."

My naturopath and both GI doctors I've seen are all convinced this is what I have regardless of the tests. All of my tests/biopsy were taken after I was already on the diet...so totally useless. Only Enterolab was positive. My new GI wanted to run the celiac panel on me so I did it on Monday but I told him its not gonna tell me anything...I've been gluten-free almost 1 year now. He wanted to do it anyway....I am curious about the total serum IgA though....I've wondered for awhile now if I'm IgA deficient or not.

My Enterolab IgA numbers were not that high in comparison to malabsorption score and I already know that my body produces lower than normal IgG. My Enterloab IgA tests for casein, eggs, and yeast were all neg. Same with IgE and IgG tests for all these foods and more....even though I *do* have severe reaction to casein and noticeable reaction to eggs. My doc says I dont produce enough IgG to show a positive result...so maybe this is the case with IgA too? I dunno...gotta wait and see.

I just wanna get all this figured out so I can put on some pounds and wear all the clothes I was wearing before all this happened. I miss my clothes.

[slpinsd]

It's hard not knowing for sure. Sometimes I wonder if it is something else entirely, though I have improved SO MUCH gluten free. My GI said that she definitely sees disease in my small intestine- though she wants to rule out bacterial overgrowth, intestinal lymphoma, and maybe crohn's I think she said. My blood tests also were borderline positive-(positive IgG) and my biopsy was negative as far as the initial opinion was concerned, but then the doc has pictures of what she sees as mild damage (scalloping). Also having h.pylori, candida, probable bacterial overgrowth and now asthma, in addition to the Celiac symptoms, I just know that gluten is at the root of all of this. I also had a low-end total IGA. How did they determine how much IgG you produce? Did they do a total IgG test? That's interesting. My total IgA was something like 108 (70-300 normal). I think I read somewhere under 100 is borderline deficient? Or is that at zero!? My Enterolab stool IgA antigliadin was bearly positive, and the anti-tG was negative, but also I was on the diet if that affected it at all. Malabsorption was negative. But then I had double DQ-2 genes, so it made me wonder. Anyway, Let us know what happens with your total IgA! Did you ever have a biopsy? Have they ruled out other causes of malabsorption?

Also, you COULD be in that 5% that does not carry the main gene? Having Graves, you may be extra-predisposed to getting Celiac.

[Rachel--24]

It's hard not knowing for sure. Sometimes I wonder if it is something else entirely, though I have improved SO MUCH gluten free.

Yeah...I totally go back and forth with this in my mind. Sometimes I'm convinced there is something else wrong and I'm just sensitive to gluten right now cuz basically I'm sensitive to everything right now.

My doctor looks at me like I'm whacked when I start questioning this diagnosis....but really...how can I know for sure?

I did have a biopsy but it was after 6 months gluten-free so it was expected to come back negative and it did. The GI said it was textbook perfect but doesnt mean I dont have Celiac cuz I'd been on the diet. He just told me it was possible regardless of the gene test and that I needed to stay off gluten based on the fact that I couldnt function or work before I started the diet and the diet corrected alot of problems for me.

My new GI basically said the same. He said no test can rule it in or out at this point and I just need to listen to my body and follow the diet. He just said it doesnt matter if its called "Celiac" or something else or what the tests say or dont say...what matters is that some foods just cause problems for us and we should use common sense and avoid those foods. He said even if he could "officially" dx me what would it change? The treatment is the same. He said every test imagineable has been run on me and I dont have cancer or anything else showing up. He said all signs point to Celiac.

I think your tets results are more definative. A positive IgG, some damage on biopsy and double DQ2...positive Enterolab. I think you've got pretty good answers there.

My doctor ran some tests looking for bacteria infections and they were all IgG related. Everything came back negative but he said my numbers were low...whereas most people have numbers in a ceratin range...I guess mine were lower than the normal ranges. I dont know...it was kind of confusing. He said my numbers were too low to show a positive.

I did have a C-Diff overgrowth but no obvious symptoms of it...I took antibiotics and no change in how I feel. The new GI told me it is very possible I had C-Diff w/out it causing me any illness. He said it can overgrow and NOT cause sickness but it was good that I took the antibiotics to prevent it from causing problems later.

I think my main problem for not recovering after going gluten-free may have been casein intolerance which I didnt recognize until 3 days ago. I think maybe I was in denial cuz I love dairy.

I think if I get better after eliminating casein I'll be satisfied with my diagnosis (or non-diagnosis)....it was just that gluten free only got me halfway there and so something else was still clearly causing me the same problems. Without an "official" dx its hard not to wonder if it could be something else entirely that noones ever thought of. I wish we knew more about Enterolab cuz my IgA was positive, tTG was positive and I had very high malabsorption. If these tests were to become accepted at some point...I would feel more sure about things.

I think you have a pretty clear diagnosis...I think the fact that there is some sign of damage and a positive dietary response with positive genes definately means you should not be eating gluten. I'm pretty sure you have Celiac but it cant hurt to get the other stuff ruled out to ease your mind...thats what I did. I'm also having a colonoscopy in 2 weeks since thats the only test I havent had yet. My grandma died of colon cancer at only 45 so I guess I'm suppossed to have one anyway.

Also, you COULD be in that 5% that does not carry the main gene? Having Graves, you may be extra-predisposed to getting Celiac.

Yeah...I think about that too...but I figure the chances are pretty slim. I do have the DQ1 gene which is the gene that those in the 5% have in common but who knows?

[slpinsd]

I think that's telling that you DO have the gene that those in the 5% have. Given your symptoms, your Enterolab testing (atleast you had a positive tTg which is more Celiac specific, right?) and what the doctors are saying- I'd run with Celiac. You could very well be in that 5%. Those 5% people are still out there SOMEWHERE, and I believe you are one of them. Especially if more than 1 doctor is telling you that Celiac is the only thing it could be. I had a colonoscopy as well-- it's pretty much the same as the endoscopy- just the other end