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I was diagnosed with Celiac 5 years ago.  Pre diagnosis i weighed 170 as a 6' male.  When i was very sick with symptoms I went down to 145.  I am eating 100% gluten free and showing no symptoms of elevated  tTG-IgA levels. 

My current weight is 155 and i cannot seem to gain weight at all.  My thought is that my villi are not recovering but my Doc said if i do not have elevated ttg-iga levels then i am not suffering from cross contamination and my villi are fine.

My questions:

Do you go for check up endoscopy periodically to see state of villi?

 

 

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Yes I got mine rechecked after a bit over 3 years, to see it was mostly healed aside from inflammation. I still have issues putting on weight and could not put on weight but could maintain it with a low carb very high protein diet.  I went ketogenic/paleo this year, and started eating a ton of fats and protein, removing grains from my diet and found myself able to put on muscle weight, It is slow and I did a post a while back, But it is all pure lean muscle mass. Note the suggest intake for this kind of diet is 1-1.5g of protein per lb of body fat. I eat mostly egg and vegan protein powders like pumpkin, sancha inchi, pea, right now. They are easy to digest and good for weight gain. The pumpkin I just started sourcing from Jarrow on Lucky Vitamin, is really high in zinc, iron, and magnesium so it is great for muscle recovery when working out. I still take some blends like Nutra-Key V-pro and MRM Veggie Elite, but recently started phasing them out due to the rice protein seems to trigger edema for me.

This kind of grain free and carb free approach is not for everyone. I just respond better to it, probably in part due to my Uclerative Colitis being triggered by carbs, grains, sugars, etc making nutrient absorption when on them less efficient, BCAAs before working out, before bed, and between meals can prevent muscle break down and help improve recovery and mass gain.

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There is a lot of bad science out there, but one theory that shows promising results for validity is that “caloric restriction”, which usually results in a low body weight, is strongly correlated with longer life. So be happy!  Why in the world would you want to gain weight when most of the world is trying to lose?

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Your BMI is in the normal range.  Maybe this is where your body wants to be “normal”.  With some 2/3 of the population now considered overweight or obese, it is easy to think that is normal!  Congratulations on your low TTG.  Sounds like you are doing everything right.  You did not complain of symptoms, so again, it sounds like you have greatly improved.  Keep eating a healthy gluten-free diet!  Make sure you are exercising as part of a healthy lifestyle.  

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40 minutes ago, cyclinglady said:

Your BMI is in the normal range.

Wow! You could be as low as 137 and still be in "normal" range. I would think that would look like skin and bones on a 6' tall male. I guess we are more programmed to see a bit of weight on people. On the flip side, I am "normal" for my height and weight, yet think I look a bit heavy. But my body LOVES this weight, no matter what I eat- a little or a lot.

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I lost 11 lbs before my dx five years ago and gained 20 lbs in less than a year after that.  I can't seem to shake off the excess weight despite a healthy diet and exercise.  But I'm still within my normal weight range (albeit on the high end) and I like my carbs a bit too much. :-)

As long as you feel well and have no symptoms you're fine.

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1 hour ago, Victoria1234 said:

Wow! You could be as low as 137 and still be in "normal" range. I would think that would look like skin and bones on a 6' tall male. I guess we are more programmed to see a bit of weight on people. On the flip side, I am "normal" for my height and weight, yet think I look a bit heavy. But my body LOVES this weight, no matter what I eat- a little or a lot.

I would say that is a nice lean build, depending, My goal is 136 at 5'11". Currently at 132 and eating like crazy with fats protein, etc, while working out and trying to build up muscle mass. As a male you feel a bit off when your this skinny and all the other guys have a lot more muscle on you. Makes you feel inadequate and like the underdog, might be a male thing. I know I am very self conscious of how thin my muscles are, finally starting to get them to come out makes me quite proud and has a nice ego satisfaction.  Unsure if other males feel the same.

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22 minutes ago, Ennis_TX said:

I would say that is a nice lean build, depending, My goal is 136 at 5'11". Currently at 132 and eating like crazy with fats protein, etc, while working out and trying to build up muscle mass. As a male you feel a bit off when your this skinny and all the other guys have a lot more muscle on you. Makes you feel inadequate and like the underdog, might be a male thing. I know I am very self conscious of how thin my muscles are, finally starting to get them to come out makes me quite proud and has a nice ego satisfaction.  Unsure if other males feel the same.

Ennis I thought you were more around 150. You look great at 132.

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I would say that your doc is wrong. There is some evidence that negative TTG levels does not mean that you are not getting some cross contamination here and there.  So, annual antibody checking does give a bit of a false reassurance when the results are negative.

The problem with repeat endoscopy is that changes seen on pathology can take 1-2 years to improve and small amounts of cross contamination can easily lead to Marsh 1 type changes. SO, if you get the endoscopy, what does it mean? If you have persistent villous atrophy, then you know you are getting some persistent changes but if you have intraepithelial lymphocytes with no atrophy (Stage 1), does it mean you made a mistake at a restaurant 2 weeks ago or you are constantly getting cross contamination and have chronic inflammation leading to malabsorption. There's almost no way to tell the difference! 

I think this is just an area of science that hasn't caught up to the questions we have. I think if you were persistently losing weight, had some other persistent symptoms, or had nutritional deficiencies on labs (low ferritin, B12, folic acid, anemia etc), it would make sense to have a repeat endoscopy. But, if your weight is stable, no nutritional deficiencies and you feel good, is it worth it?

Do you ever go back to your GI for a review? What did he/she say?

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