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Recovering, but still low energy. Tips?


celiacinrecovery

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celiacinrecovery Apprentice

I was diagnosed in my late 30s, and it took a while for me to sort things out. I've been feeling much better the past two years, and have gotten my persistent DH under control in the past half year. So, that part is great.

However, I still lack energy. I used to be active, but even if I force myself to exercise these days I'm easily exhausted. I feel SO much better than when I was still getting glutened -- its night and day! -- but I want to have more energy to get things done.

I've seen a nutritionist and various doctors. I have a lot of food issues - dairy makes me break out in DH, as do pretty much all processed foods (despite being certified gluten free). So, no peanut butter, no yogurt, no Lara bars, etc. I tried a certified gluten-free weight gainer, but broke out in DH. I've had bad reactions to almond milk the last couple times I've tried it. It would appear that I'm one of those people that is supersensitive to even small amounts of gluten in products that qualify as gluten-free.

I eat a lot of meat and potatoes. Lots of vegetables really (carrots, greens etc), and some fruit like oranges and bananas. I have eggs for breakfast. I drink a lot of water and some tea. 

I take some supplements. A daily multivitamin, calcium, vitamin D drops, and magnesium. I take fish oil daily.

I could use more calories in my diet, but am having difficulty figuring out how to fit them in.

So, besides increasing my calories, I was wondering if there are some telltale nutritional deficiencies I should/can address, whether through supplementation or whole foods. I've looked at lists of the most common nutrients that celiacs tend to lack and feel like I am addressing most of them, but perhaps I'm not hitting the proper levels. I don't know ... I'm kinda new to this.

Would appreciate any insights into how I can overcome the lack of energy.


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trents Grand Master

I would add a B complex to your supplements.

Scott Adams Grand Master

I drink green tea...and coffee, then more tea...you get the idea! 😉

Another supplement that did help me with this (or at least counter the effects of too much caffeine!) is DHEA, but you should read up about it first. 

Corinne D. Contributor

For calories, you can up your fat intake - choose fattier cuts of meat. Also, olive oil, coconut oil, coconut milk and avocadoes are healthy and high calorie.

celiacinrecovery Apprentice
4 hours ago, Corinne D. said:

For calories, you can up your fat intake - choose fattier cuts of meat. Also, olive oil, coconut oil, coconut milk and avocadoes are healthy and high calorie.

Is coconut milk ever cross-contaminated? I find myself eyeing it at the grocery store but none of the brands have any gluten free certification and I can't seem to find any info about them online.

 

Corinne D. Contributor

When I was still able to have coconut milk, I would choose one with only coconut and water as ingredients and make sure there was no mention of gluten traces. Being very sensitive to all sorts of things, I would never buy one with additives like carrageenan or guar gum. None of the products I chose were certified gluten-free and I never had problems with those.

I am not sure what brands are available where you live. I'm in France and the brands I could find here were either Grace, Ayam or Thai Kitchen. Not all versions of these brands, however, have no additives so I'd make sure and check the ingredients.

celiacinrecovery Apprentice
1 hour ago, Corinne D. said:

When I was still able to have coconut milk, I would choose one with only coconut and water as ingredients and make sure there was no mention of gluten traces. Being very sensitive to all sorts of things, I would never buy one with additives like carrageenan or guar gum. None of the products I chose were certified gluten-free and I never had problems with those.

I am not sure what brands are available where you live. I'm in France and the brands I could find here were either Grace, Ayam or Thai Kitchen. Not all versions of these brands, however, have no additives so I'd make sure and check the ingredients.

You mention you're not able to have coconut milk anymore. Does this have anything to do with celiac? (Not trying to pry...just curious as I'm seriously considering incorporating some of this into my own diet.)


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Corinne D. Contributor

I suppose it has to do with how celiac specifically manifests in my body. If you browse this forum, you will notice that a lot of us have intolerances to various other foods apart from gluten - of course, not everyone has the same or as many intolerances as others. However, this it by no means a rule - there are certainly celiacs who can have all the foods in the world except for gluten. I see no reason why anyone should abstain from any food if they can have it with no issues.

AlwaysLearning Collaborator

You might try going supplement free for a while. Most supplements are not bioidentical to the nutrients we get from our food and can have side effects. Like vitamin D supplements can be tough on your kidneys, for example. And I wouldn't supplement anything unless you've actually tested as having a deficiency.

DJFL77I Experienced
5 hours ago, AlwaysLearning said:

And I wouldn't supplement anything unless you've actually tested as having a deficiency.

I had my D tested and its normal level..  also all of my other vit / minerals are normal level..

yet my Dr still said to take a multi vitamin as well as Vitamin D and B12...    but im not

Scott Adams Grand Master

There may be other reasons to take vitamin D right now, and that is covid-19. Studies have shown that those with higher vitamin D blood levels have less severe symptoms when they get covid-19. That said, it is a vitamin that can build up in your system and be toxic at too high levels.

ch88 Collaborator
On 12/3/2020 at 7:56 AM, celiacinrecovery said:

You mention you're not able to have coconut milk anymore. Does this have anything to do with celiac? (Not trying to pry...just curious as I'm seriously considering incorporating some of this into my own diet.)

Yes coconut milk is gluten free and safe for Celiacs. 

  • 3 weeks later...
Brett92 Rookie
On 12/3/2020 at 5:35 AM, celiacinrecovery said:

However, I still lack energy. I used to be active, but even if I force myself to exercise these days I'm easily exhausted. 

I can relate to this part alot. Out of curiosity are you exhausted during exercise or is it after? And is it an out of breath exhaustion or a tired (need to sleep) exhaustion?

Im still trying to determine whether celiac is to blame 100% for my fatigue. I will say is the one time over the last 12 months that I had any relief was when I tried a meat only diet for a couple of weeks. I had a week of feeling normal... however I didn't excersise during that week so I cant say 100% if the energy was due to only eating meat. But if it is due to the diet im thinking maybe my body isn't reacting well to alot of wholefoods that i thought would be great for me....I am planning on reattempting this in the new year but I ate so much meat during that diet that it makes me sick just thinking about it.

celiacinrecovery Apprentice
On 12/26/2020 at 5:39 AM, Brett92 said:

I can relate to this part alot. Out of curiosity are you exhausted during exercise or is it after? And is it an out of breath exhaustion or a tired (need to sleep) exhaustion?

Im still trying to determine whether celiac is to blame 100% for my fatigue. I will say is the one time over the last 12 months that I had any relief was when I tried a meat only diet for a couple of weeks. I had a week of feeling normal... however I didn't excersise during that week so I cant say 100% if the energy was due to only eating meat. But if it is due to the diet im thinking maybe my body isn't reacting well to alot of wholefoods that i thought would be great for me....I am planning on reattempting this in the new year but I ate so much meat during that diet that it makes me sick just thinking about it.

I suspect part of it is lowish energy from not consuming enough calories - my diet is still a little wimpy as I try to figure out what I can add. I can do some light strength exercises - I'll do some chinups/pullups each day - and more recently I've added some light cardio. In that respect I can do some stuff, but without the proper nutrition I don't see much of gains, which is a little frustrating. (I've tried adding weight gainers and saw great results, then got sick because it contained dairy!)

DJFL77I Experienced

same..

i lost about 10 pounds after going gluten free.... 

i'm probably only eating like 1,200 calories a day right now!  ;o/

trying to figure out what to eat to get more calories in...  also my gut still bothers me when eating and even when not eating.. so i tend  to eat less..

 I did jut make some home made Almond butter cookies... real simple and taste great

almond butter

1 egg

vanilla

sugar...

 

 

celiacinrecovery Apprentice

I think part of my problem is I tend to have a paltry breakfast. These days I usually have a few boiled eggs, which doesn't exactly make me feel full or energetic.

I used to eat oatmeal each morning and that was a bit more filling, but despite it being certified gluten free it seemed to make me ill. It seems from this board that I'm not the only one that tends to get sick eating gluten-free oats.

So, I'll see if I can figure out something healthy that I can add to my breakfast. Maybe hash browns/home fries will help fill me up.

DJFL77I Experienced

2 large Bananas 

 1 Table spoon of Almond Butter

2 Eggs

trents Grand Master
55 minutes ago, celiacinrecovery said:

It seems from this board that I'm not the only one that tends to get sick eating gluten-free oats.

I doubt that. There are many on this forum who avoid even gluten-free oats because they react to them.

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    • trents
      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
    • trents
      Do you mean that your stools firmed up when you began to cut gluten from your diet?
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