Weight Issues

[su2099]

Does anybody else have a hard time maintaining their weight or trying to gain weight? I was diagnosed in February 23 and I’m trying to get a handle on this subject. I’m on a gluten free diet and my weight never goes above 152 pounds or lower than 145.I’ve been 151 pounds ever since high school and I’m a 41 year old male. I just joined this site and I look forward to our conversations. 

[cristiana]

Hello su2099 and welcome to the forum

I take it that you are hoping to gain weight?  If so, if you are anything like me, I would say it is possibly early days yet.  I noticed when I was first diagnosed it took several months to really start to gain weight again. 

I lost about 14 pounds in the months running up to my diagnosis, , and probably a few more even after I had started the diet.  I seem to recall my weight plateaued at this low weight for a few months, then started slowly to increase again to my usual weight.  Annoying I cannot remember exactly how long it took, but I think probably about a year or so before the scales reached my previous weight.  Now, I can't seem to lose it (but that's another story!)

If your gut was badly damaged by coeliac disease it will take a while to be able to absorb food properly again, while you are healing, which could explain the situation.

Are you still experiencing any gastric symptoms, such as diarrhea?

Cristiana 

[su2099]

Thank you for sharing. I haven’t had any diarrhea since my diagnosis with the exception of when there is cross contamination. Have you experienced any brain fog? 

[trents]

su20299, are you taking any vitamin and mineral supplements to correct the deficiencies that are inevitable with long-term undiagnosed celiac disease? How's your appetite? How often would you estimate CC (cross contamination) is occurring? If often enough, it will prevent healing of the gut.

Edited August 24, 2023 by trents

[su2099]

Hi Trents- 

My dr recommended a multivitamin that has all of the daily value minerals in it which I take regularly. I get cross contamination I would say probably once per month. Is this normal? 

[trents]

A multivitamin product is probably minimally addressing deficiency issues. Many of us here on the forum would have you add in a high potency B-complex, 5-10,000 IU of D3, magnesium glycinate and zinc. And maybe a sublinqual B12 to boot.

[su2099]

Thank you for your info. I’ve got two little kids at home and I’m always getting sick. Where can you buy the extra minerals that you speak of?

[trents]

Just now, su2099 said:

Thank you for your info. I’ve got two little kids at home and I’m always getting sick. Where can you buy the extra minerals that you speak of?

Most of the things on that list I gave can be found at Costco. Their Kirkland Signature and Nature Made lines of vitamins and minerals are typically gluten free (it will say so on the packaging or the bottle if it is). The magnesium glycinate I get on Amazon: "Doctor's Best" brand. Zinc is really good for strengthening the immune system. It's important to make sure you buy gluten free supplements as wheat starch can be used as a filler in pills and meds.

[trents]

This might be helpful to you as studies show that most people who claim to be eating gluten free are really not. They are eating a lower gluten diet. Are you the only one in your house eating gluten free. Have your kids been checked for celiac disease and their father as well? A couple of recent large studies show that when the first degree relatives of those with active celiac disease have a geater than 40% chance of developing active celiac disease themselves. But most first degree relatives who were found to have celiac disease were caught by surprise because they had few or no symptoms. They were "silent" celiacs.

This might be helpful in avoiding CC:

 

[su2099]

Thanks Trents. My son is scheduled for testing next month but we are pretty certain he has celiacs as well. Our family kitchen will go completely gluten free after his diagnosis. The dr’s want to confirm if he has it with a biopsy. My wife and daughter don’t have any gluten issues, it’s just my son and daughter. Normally when I get cross-contaminated, it’s when I travel on the road for work and have to rely on kitchens to not get me sick. I’ll look at Costco again. Thanks for that tip and the link. 

[Raquel2021]

4 hours ago, su2099 said:

Does anybody else have a hard time maintaining their weight or trying to gain weight? I was diagnosed in February 23 and I’m trying to get a handle on this subject. I’m on a gluten free diet and my weight never goes above 152 pounds or lower than 145.I’ve been 151 pounds ever since high school and I’m a 41 year old male. I just joined this site and I look forward to our conversations. 

I have been gluten free for almost 3 years and have the same problem with not being able to put weight on. My antibodies are now normal so it is not the celiac issue for me I think.  

[trents]

1 hour ago, su2099 said:

Thanks Trents. My son is scheduled for testing next month but we are pretty certain he has celiacs as well. Our family kitchen will go completely gluten free after his diagnosis. The dr’s want to confirm if he has it with a biopsy. My wife and daughter don’t have any gluten issues, it’s just my son and daughter. Normally when I get cross-contaminated, it’s when I travel on the road for work and have to rely on kitchens to not get me sick. I’ll look at Costco again. Thanks for that tip and the link. 

If you re-read this post I think you will see an error that makes it confusing. I think you meant to say it's just "my son and me" instead of "it's just my son and daughter" unless, that is, you are referring to another daughter.

[su2099]

Thanks Trents. I can see how this could be confusing. My wife and daughter don’t have any gluten issues but my son and I do. I’m concerned about my weight because I’m eating 2000-2400 calories a day yet I’m not getting over 152 pounds. I wonder if something else is going on. 

[trents]

31 minutes ago, su2099 said:

Thanks Trents. I can see how this could be confusing. My wife and daughter don’t have any gluten issues but my son and I do. I’m concerned about my weight because I’m eating 2000-2400 calories a day yet I’m not getting over 152 pounds. I wonder if something else is going on. 

How tall are you? 2000-2400 a day is about average for an adult. I wouldn't expect to gain weight on that amount.

[su2099]

I’m about 5’ 10”. My wife said I need to eat more to gain weight but when i eat 2400 calories, I can feel all the food in my stomach and it gives me a full feeling that I can’t eat anymore. So Im not sure what I should be doing about this. Thanks for listening and helping. 

[trents]

Yes, a buck 52 is a little light for a guy 5'10". But, it's not cachectic by any means.

[knitty kitty]

@su2099, 

Welcome to the forum!  

Replacing nutrients that you're not absorbing is beneficial while recovering from Celiac Disease.  

Be aware that vitamins are added to gluten based products to replace those destroyed in processing.  Now that you are not getting those, you need to eat a nutritionally dense diet.  To replace the vitamin stores in your body that are low, supplementing with a B Complex and extra Thiamine (Vitamin B 1) is a good idea. 

Unintentional weight loss or failure to gain weight are symptomatic of Thiamine deficiency. Thiamine is needed to process carbohydrates and fats and proteins and turn them into energy for the body to use in organs and muscles.  When Thiamine is low, the body conserves its available thiamine by burning fat and  muscle.  Thiamine deficiency is called Beriberi, meaning "I can't, I can't".  The World Health Organization has a field test for Thiamine deficiency.  Can you rise from a squat? Lowering the body into a squat can deplete thiamine inside muscle cells, leaving none to use when one tries to return to standing, causing the muscles to lock up.  This happened to me in the grocery aisle when getting something from the bottom shelf.  

Thiamine deficiency needs to be corrected as quickly as possible so no neurological damage is done.  Our brain just thinking at a desk job uses as much Thiamine as muscles do running a marathon.  Irritability, anxiety, and poor memory are also symptomatic of Thiamine deficiency.  

Thiamine deficiency is treated with high doses of Thiamine (500- 2000 mg/ day) for several months.  Benfotiamine, a form of Thiamine, has been shown to promote intestinal healing, too.  A B Complex supplement is needed because all eight B vitamins work together.  Magnesium Glycinate supplements are needed, too.  Magnesium and thiamine make essential enzymes.  

Hope this helps!

[cristiana]

12 hours ago, su2099 said:

Thank you for sharing. I haven’t had any diarrhea since my diagnosis with the exception of when there is cross contamination. Have you experienced any brain fog? 

Yes, brain fog is something that sometimes still affects me.  It is common among coeliacs, but in my case now, ten years on from my diagnosis, it could also be a menopause issue, and of course that wouldn't affect you!  I know people who have had COVID complain of the same.  

When it strikes I find a really brisk walk really helps 'clear the cobwebs away' from my mind.  I find if I need to think clearly for work and I'm having a bad day, a brisk walk always helps.  Also, sublingual B12 tablets have really made a difference, and good cup of coffee (but not too much!).  

 

[LCAnacortes]

@knitty kitty My heart beat is pounding in my ears. I remember a post last year that talked about a vitamin deficiency that causes that.  Would you please remind me what it is? Thank you so much! 

[knitty kitty]

@LCAnacortes,

Vitamin D deficiency can cause tinnitus.  Vitamin B12 deficiency can cause tinnitus, too.  

Iron deficiency as in iron deficiency anemia can cause pulsating tinnitus.  

Zinc and magnesium can help relieve tinnitus, too.  

You're very welcome.

[Wheatwacked]

In addition,

 You need more iodine in your diet to improve muscle tone.  You should focus on adding muscle for weight, not carbohydrates calories.  Excess carbohydrates just gets stored as fat.  "A benefit to carbohydrates is that when you consume carbohydrates you're going to bump up that insulin level. This decreases cortisol levels and gets you into that parasympathetic rest and digest mode. That's one of the benefits of carbs that a lot of people don't think about."  Just eating puts you into "digest mode".  Insulin transports glucose to the cell but it doesn't turn it into anything.  More importantl is to have enough B vitamins stored up to turn the carbs into energy.

Low iodine can be a cause of brain fog.  Learn to like kelp.  It may sharpen your thoughts. It will definately improve your muscle tone.  Maybe improve your hair, skin and nails. Low iodine is the cause of Cretenism.

   Adding  Choline (liver, eggs, beef,) can help brain fog. 

On 8/24/2023 at 7:34 PM, Raquel2021 said:

I’m a 41 year old male.

This is the age that so many eating the western diet get the spare tire look. The glycogen in carbs pulls lots of water into your muscles and can offer an inflated look.

150 pounds 5'10" is a healthy BMI.  I'm back down to 150 at 6'3" and feel great.  If your nutrition is right you will gravitate towards your optimum weight.

 

 

 

[cristiana]

18 hours ago, LCAnacortes said:

@knitty kitty My heart beat is pounding in my ears. I remember a post last year that talked about a vitamin deficiency that causes that.  Would you please remind me what it is? Thank you so much! 

@LCAnacortes   Hello - a friend of mine on this forum had this and she was iron anemic.  Your tinnitus may be unrelated to anemia, but if it is iron anemia it will need medical supervision to correct, because if you take too much iron that can cause other medical complications.

[LCAnacortes]

@cristiana Thank you so much. At last check my iron level was OK but I will keep an eye on that. I was iron deficient in my 20's and then really anemic when I was pregnant with my daughter 35+ years ago but it has been OK since then. In 2016 I was vitamin D defincient so started taking 5 to 6000 IU per day.  Then in April 2022 I learned that I was likely celiac so I went gluten free and started supplementing.  Guessing it was in January 2023 that I stopped taking magnesium glycinate and started taking the oxide version but that really made my diarrhea worse so I stopped taking any form of magnesium.  After about a month - the extreme back spasms started up again so I am back on Magnesium Glycinate.  I'm sure I went deficient in that and started taking it again a couple of weeks ago. I'm currently taking a Costco B Complex but I'm going to add another B12 to that and see if that helps.  Thanks so much!

 

[trents]

Make that a sublingual B12 as they are absorbed much better than the swallowed kind.