gaining too much weight

[momashes]

I was diagnosed in March 2022. Had a three day stay on hospital bc I was severely malnutrition (low iron ferritin at 3 and hemoglobin was 6.1) doctors were stunned I was walking talking and coherent.  I felt fine except the explosive diareah that was going on for 4 months! Had an endoscopy and was rated at marsh 3b. Well gluten free diet was the answer.  It worked wonderfully.  Instantly gained 10 pounds and felt amazing. I was surprised I could ever feel that good. 

Now in August 2023 I have gained over 60 pounds.  And still gaining no matter what I do.  I'm freaking out.  Nothing fits me and I'm so sad to see this change.  I workout 3 to 5 times a week and hard workouts.  I only eat maybe 1200 calories no pop no cookies no cake none of that.  I normally eat Broccoli eggs cheeseburgers (no bun) or tuna fish. Occasionally less than once a week I eat ice cream.  I'm still gaining weight.  For one week I ate 600 or less calories a day and lost 4 pounds.  But I can't keep doing that it makes me angry haha.

I am wondering if I am really a celiac. Maybe I would rather be sick than gaining weight.  I don't know how to be okay with this.  I have always had a very easy time losing weight.  very easy, like go to the gym for a month lose 10 pounds and gain tons of muscles and look amazing. Now I can lose a pound without starving myself. 😩

Some advice is focus on how healthy I have become.  Yes my iron is amazing my hemoglobin is perfect. But my blood pressure went from my normal 110/60 to 130/80. So am I healthy? I don't even know what healthy is anymore.

[Scott Adams]

If you had marsh 3b villi damage then you most certainly have celiac disease, and should be 100% gluten-free. As your gut heals you will absorb nutrients better, so some people do gain weight after going gluten-free...I certainly did. 

Also, having malabsorption can cause you to feel like you are starving, and cause overeating. It may be important for you to try to eat low carb, or less calories, exercise, etc., to keep weight off, if that is your goal.

[cristiana]

Hi @momashes

Have you ever measured your BMI?  If so, how does it compare now with what it was before you put on this weight?  

Cristiana

 

[knitty kitty]

@momashes,

Have you been checked for vitamin and mineral deficiencies?  Besides the low iron?

How is your Vitamin D level?  It needs to be above 80 nmol/L for Vitamin D to work like a hormone and reduce inflammation and modulate your immune response.  

How about B Complex vitamins?  Thiamine is needed to turn carbohydrates, fats, and proteins into energy.  Symptoms of Thiamine deficiency can be weight gain or weight loss.  When low in Thiamine, the body turns carbs and proteins into fats and stores them.  One can eat sufficient calories, but not enough thiamine and other B vitamins to turn those calories into energy, so the excess calories are stored as fat.  This is called High Calorie Malnutrition.  

Thiamine also helps regulate blood pressure.  Irritability is another symptom of Thiamine insufficiency.  

Check with your doctor and nutritionist about supplementing with a B Complex supplement and extra Thiamine.  The B vitamins are water soluble and nontoxic.  If you don't need them, they are easily excreted in urine.  With Marsh 3b damage, you and your doctor  should definitely be concerned about malabsorption of micronutrients.

I took Benfotiamine, a form of thiamine scientifically shown to promote intestinal healing, in addition to a B Complex supplement, Vitamin D, zinc and magnesium.  All of these are commonly low in newly diagnosed Celiac people.

Hope this helps!

[cristiana]

  On 9/1/2023 at 2:24 AM, knitty kitty said:

How about B Complex vitamins?  Thiamine is needed to turn carbohydrates, fats, and proteins into energy.  Symptoms of Thiamine deficiency can be weight gain or weight loss.  When low in Thiamine, the body turns carbs and proteins into fats and stores them.  One can eat sufficient calories, but not enough thiamine and other B vitamins to turn those calories into energy, so the excess calories are stored as fat.  This is called High Calorie Malnutrition

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This is so interesting, thanks for sharing. 

[Raquel2021]

  On 8/31/2023 at 1:08 PM, momashes said:

I was diagnosed in March 2022. Had a three day stay on hospital bc I was severely malnutrition (low iron ferritin at 3 and hemoglobin was 6.1) doctors were stunned I was walking talking and coherent.  I felt fine except the explosive diareah that was going on for 4 months! Had an endoscopy and was rated at marsh 3b. Well gluten free diet was the answer.  It worked wonderfully.  Instantly gained 10 pounds and felt amazing. I was surprised I could ever feel that good. 

Now in August 2023 I have gained over 60 pounds.  And still gaining no matter what I do.  I'm freaking out.  Nothing fits me and I'm so sad to see this change.  I workout 3 to 5 times a week and hard workouts.  I only eat maybe 1200 calories no pop no cookies no cake none of that.  I normally eat Broccoli eggs cheeseburgers (no bun) or tuna fish. Occasionally less than once a week I eat ice cream.  I'm still gaining weight.  For one week I ate 600 or less calories a day and lost 4 pounds.  But I can't keep doing that it makes me angry haha.

I am wondering if I am really a celiac. Maybe I would rather be sick than gaining weight.  I don't know how to be okay with this.  I have always had a very easy time losing weight.  very easy, like go to the gym for a month lose 10 pounds and gain tons of muscles and look amazing. Now I can lose a pound without starving myself. 😩

Some advice is focus on how healthy I have become.  Yes my iron is amazing my hemoglobin is perfect. But my blood pressure went from my normal 110/60 to 130/80. So am I healthy? I don't even know what healthy is anymore.

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Ask your doctor for a Thyroid panel.  A lot of the celiacs have also issues with Thyroid.  That would make you gain a lot of weight or lose a lot of weight depending on how the Thyroid is functioning. 

[knitty kitty]

Thiamine insufficiency can cause dysfunction in the thyroid.  

[ALee]

Is there a test for thiamine deficiency? 

[knitty kitty]

There are different blood tests for Thiamine, but they are not accurate.  An Erythrocyte Transketolase test checks for activity in a Thiamine containing enzyme.  But there's disagreement on how accurate that test is, too.  

The World Health Organization has a field test for Thiamine insufficiency.  Can you rise from a squat unaided?  

I squatted down to get something off a bottom shelf in a grocery store and could not rise.  So embarrassing!  

WHO recommends trying 500 mg to 1500 mg of Thiamine Hydrochloride for several days and look for signs of improvement. 

I had improvement within an hour.  If not as deficient as I was, the improvements may be more subtle...more energy, less fatigue, less brain fog, better mood.  

If there's improvement, thiamine should be continued for several months.  

Benfotiamine is another form of Thiamine that is wonderful.  It helps heal the digestive tract and helps brain function.

Dr. Lonsdale has studied Thiamine deficiency disorders for decades.... this article explains more....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Keep us posted on your progress!

[ALee]

  On 11/15/2023 at 10:17 AM, knitty kitty said:

There are different blood tests for Thiamine, but they are not accurate.  An Erythrocyte Transketolase test checks for activity in a Thiamine containing enzyme.  But there's disagreement on how accurate that test is, too.  

The World Health Organization has a field test for Thiamine insufficiency.  Can you rise from a squat unaided?  

I squatted down to get something off a bottom shelf in a grocery store and could not rise.  So embarrassing!  

WHO recommends trying 500 mg to 1500 mg of Thiamine Hydrochloride for several days and look for signs of improvement. 

I had improvement within an hour.  If not as deficient as I was, the improvements may be more subtle...more energy, less fatigue, less brain fog, better mood.  

If there's improvement, thiamine should be continued for several months.  

Benfotiamine is another form of Thiamine that is wonderful.  It helps heal the digestive tract and helps brain function.

Dr. Lonsdale has studied Thiamine deficiency disorders for decades.... this article explains more....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Keep us posted on your progress!

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Thanks for this info @knitty kitty. I guess, I would ask - how far down does the squat have to be? I have a knee replacement so that hinders my squat ability a bit!

I have a wonderful gastro, but had difficulty finding someone who specializes in Celiac. Reading up on these forums is fantastic. I was diagnosed about 10 years ago (blood and biopsy). I'm finding now 10 years later after being gluten-free that I'm having some digestive upset and I'm even more sensitive to contamination if eating out. I'm sure there is malabsorption going on (lots of difficultly loosing weight and keeping it off the last 5 years in particular), I'm aging too so there's also that! I've tried several diets with no carbs - lost 17 lbs in about 2 months, then none over the next 7 months. Now I'm trying to hack my system to figure out what I might be lacking. I've done AIP and didn't identify any other sensitivities other than dairy. I'm also considering doing an elimination diet to try to figure out what is bothering me now. Leafy greens might be one. Are there any celiac specific recommended dietitians listed on this site? I would love to find someone to help me work through this phase of Celiac Disease, but I want the right skilled person.

[knitty kitty]

@ALee,

Don't hurt yourself trying to squat!  Have you had your Vitamin D level checked?   B12? 

Have you been supplementing with any vitamins since you've been on a gluten free diet?   

The gluten free diet and low carb diets can be low in vitamins and minerals, especially over a long period of time.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  If you eat out and get contaminated, the ensuing inflammation can contribute to malabsorption of nutrients.  

Losing some weight when switching to a low carb diet is understandable.  It's important to get those essential vitamins found in carbs from other nutrient dense foods.  

When we get subclinically low in Thiamine, our bodies start burning fat and muscle in an effort to save the thiamine that is left for important organs like the brain and heart.  Losing weight without trying can be a sign of Thiamine deficiency.   If we're getting some Thiamine, but not quite enough, a subclinical deficiency, weight can be difficult to shift.   Seems as though we're burning off fat as quickly as we store extra calories as fat.

Supplementing Thiamine and looking for improvement is an approved method of checking for Thiamine insufficiency and deficiency.  

There are eight water soluble B vitamins, including Thiamine.  They all need and depend on each other to function properly.  Thiamine also needs magnesium to make important enzymes.  Supplementing with high dose Thiamine, a B Complex supplement and magnesium for several months can help.  

Benfotiamine and Allithiamine, fat soluble forms of Thiamine, are beneficial because they can get into cells easily.  Benfotiamine has been shown to promote intestinal healing.  Allithiamine helps with brain function. 

Check with your doctor before supplementing.  Tests for vitamin deficiencies is not accurate if you have been supplementing vitamins and minerals prior to testing.

This article explains how aging is related to subclinical Thiamine deficiency.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

https://www.hormonesmatter.com/mitochondria-need-nutrients/

Hope this helps!

 

[ALee]

  On 11/15/2023 at 7:36 PM, knitty kitty said:

@ALee,

Don't hurt yourself trying to squat!  Have you had your Vitamin D level checked?   B12? 

Have you been supplementing with any vitamins since you've been on a gluten free diet?   

The gluten free diet and low carb diets can be low in vitamins and minerals, especially over a long period of time.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  If you eat out and get contaminated, the ensuing inflammation can contribute to malabsorption of nutrients.  

Losing some weight when switching to a low carb diet is understandable.  It's important to get those essential vitamins found in carbs from other nutrient dense foods.  

When we get subclinically low in Thiamine, our bodies start burning fat and muscle in an effort to save the thiamine that is left for important organs like the brain and heart.  Losing weight without trying can be a sign of Thiamine deficiency.   If we're getting some Thiamine, but not quite enough, a subclinical deficiency, weight can be difficult to shift.   Seems as though we're burning off fat as quickly as we store extra calories as fat.

Supplementing Thiamine and looking for improvement is an approved method of checking for Thiamine insufficiency and deficiency.  

There are eight water soluble B vitamins, including Thiamine.  They all need and depend on each other to function properly.  Thiamine also needs magnesium to make important enzymes.  Supplementing with high dose Thiamine, a B Complex supplement and magnesium for several months can help.  

Benfotiamine and Allithiamine, fat soluble forms of Thiamine, are beneficial because they can get into cells easily.  Benfotiamine has been shown to promote intestinal healing.  Allithiamine helps with brain function. 

Check with your doctor before supplementing.  Tests for vitamin deficiencies is not accurate if you have been supplementing vitamins and minerals prior to testing.

This article explains how aging is related to subclinical Thiamine deficiency.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

https://www.hormonesmatter.com/mitochondria-need-nutrients/

Hope this helps!

 

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Thanks again! This is wonderful information. I have had my D checked and it's always low. I was prescribed D3 and it was still low on last check. B12 hasn't been checked. I probably should be supplementing D3, B12, Magnesium, Zinc. I was taking a multi along with all of these but had little to no effect.