Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Weight

Joelski

Recommended Posts

Joelski Newbie
Joelski
Posted

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?

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted

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.

Xiao Bai Rookie
Xiao Bai
Posted

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?

cyclinglady Grand Master
cyclinglady
Posted

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.  

Victoria1234 Experienced
Victoria1234
Posted
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.

tspiggy Apprentice
tspiggy
Posted

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.

Ennis-TX Grand Master
Ennis-TX
Posted
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Victoria1234 Experienced
Victoria1234
Posted
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.

Joelski Newbie
Joelski
Posted
  • Author

Thanks everyone.

 

TexasJen Collaborator
TexasJen
Posted

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?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Seeeye
    Newest Member
    Seeeye
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…                 
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...