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Gluten-Free Symptoms - Is This Normal Recovery?

CantWeight

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CantWeight Rookie
CantWeight
Posted

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?

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CantWeight Rookie
CantWeight
Posted
  • Author

Am I posting this is the wrong place? It had loads of views but no response :(

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?

gary'sgirl Explorer
gary'sgirl
Posted

I don't think you posted in the wrong place, sometimes people don't know what to answer or maybe just not the right people read it yet. :rolleyes:

I haven't gotten my hands on any books yet, but I want to and have been thinking of posting a question myself about recomended reads soon.

I think your experience is pretty normal. Many people go through a withdrawal period from the gluten and have some new symptoms - like you describe - for a while. It's different for everyone. The D could be your body cleaning itself out after being constipated for years. The fatigue I think is really common for any drastic change and your body may just be craving a lot of rest to help it recover more quickly now that you have taken the gluten and dairy out of your diet.

Also, keep in mind that a lot of people have to cut out other foods for a while because they are hard to digest or eritate the intestinal walls.

I have had to go off of nightshades, all meat (i can eat some fish), corn, rice, and nuts to name a few. I'm hoping that I will be able to add most of those back in after my gut heals. I am trying rice and corn a little again, but I think I may have to take it back out.

Anyway, keep reading this site - it has some of the best info out there. You can look up other threads that people have started and read some of the articles and lists posted on the sight.

I hope you feel some encouragement about this soon.

Sarah

sa1937 Community Regular
sa1937
Posted

I haven't gotten my hands on any books yet, but I want to and have been thinking of posting a question myself about recomended reads soon.

A book I would highly recommend is Celiac Disease: A Hidden Epidemic by Dr. Peter Green, Director of the Celiac Disease Center at Columbia University (newly updated early this year). It covers a lot of info from a very knowledgeable doctor.

GFLindsey Explorer
GFLindsey
Posted

I'm not really sure what normal symptoms are, but I can tell that I have been gluten free for 3 months and I still don't feel great. I used to get terrible diarrhea and that has gone away -- along with my mouth ulcers and the ringing in my ears. My new symptoms are extreme bloating and nausea after eating.

I would suggest Gluten Free Living for Dummies. I found it really helpful and I got it online for 10 bucks! It helps with all of the hidden sources of gluten. Also, read as much as you can on this site. I learned a lot about the diet -- but it takes time and mistakes. (For example, I was making myself extremely sick by using hand sanitizer before each meal that had tocopheryl acetate -- which had wheat in it. WHO KNEW?!?)

I hope you get to feeling better soon. Are you considering seeing a specialist eventually? I finally had an appointment with a GI doc who specializes in several diseases including Celiac. Totally worth the wait and the money! He really helped me feel like I am getting on the right track to a healthy lifestyle.

Best of luck to you.

Dace Rookie
Dace
Posted

You got some good input already about books and such, but I would like to address diet.

You mention being low carb and that the bulk of your diet is protein and veg.

I have a couple questions and then I will give you some feedback, ok?

What does your typical day's food intake look like, what exactly did you eat today or on a typical day?

How long have you been low carb? and specifically what foods do you avoid (besides dairy and gluten)?

Celiacs/gluten intolerance aside, sometimes it takes your body time to recover from a higher carb lifestyle and can take a while to start seeing results, my Hubby is gluten intolerant and cut out most refined carbs in Jan.....it has only been in the last 6 weeks that he has started to see steady weight loss....so hang in there!

lucia Enthusiast
lucia
Posted

hi, I'm new here and newly diagnosed with gluten intolerance. I've been gluten-free and dairy-free for about one month with only a couple of reactions when dining out because they served me something exposed to gluten. I already eat a low-carb diet so I don't even eat gluten-substitute foods like bread, snacks, etc. mostly just proteins and vegetables. For the last couple of years (or longer, don't know) I was pretty constipated but for about the last month (since gluten-free) I have had diarrhea and felt fatigued. Is this normal in the recovery process? I'm very overweight and been trying to lose weight and haven't been able to lose one pound in months. Arg!

I haven't yet seen a specialist, I was diagnosed by my endocrinologist, so I know just about nothing. Any books you could recommend?

_____________________________________________________________________

I'm new as well, and so struggling through the process of going gluten-free. It's been about 5 weeks for me. It is incredibly frustrating and slow.

I've already identified several times when I was "glutened" accidentally - the first time by a barley grain coffee substitute, and the second by a bottle of "superfood" juice that included wheat grass. A third time I came down suddenly with symptoms again, but couldn't identify the source. Everytime I've been gluttened, I've suffered another 5 days with GI symptoms. It's crazy!

I went through gluten withdrawal - very scary! I had headaches, night sweats, low blood pressure so I felt freezing cold, debilitating tiredness.

When my GI symptoms resolve, I still suffer painful neuropathy, dizziness, brain fog, and fatigue. Additionally, I newly am suffering insomnia (no idea where that came from).

I pretty much have spent the past 5 weeks on the couch, same place as I spent the last 3 months before that. haven't had an official diagnosis. I just have to believe there's an end to all this. Everyone at celiac.com is helping tremendously : )

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  • 2 weeks later...
one more mile Contributor
one more mile
Posted

try to see what you have added to your diet. I found when I went of Gluten I added soy. soy gives me DH. So to corn chips.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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