Jump to content
  • 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

Side Effects From Going Gf?


OhNoes

Recommended Posts

OhNoes Rookie

I've been gluten-free (aside from two accidents, er.. "learning experiences") for 12 days now and am wondering if the stuff I've been experiencing is fairly typical.

Aside from GI symptoms lessening (YAY!) and my skin looking a little better, some things about going gluten-free have not been pleasant. SHEESH! For all the hard work of starting a gluten-free diet, I guess I was expecting rainbows to appear and birds to sing every morning, for crying out loud!

Today I had no appetite at all (I'm 27 and that's the 4th time in my life to have ever lost my appetite) and even less energy. I was in bed most of the day. Also, I used to be able to go to the gym for a couple of hours at a time, but since going gluten-free it's like my body's attention is somewhere else and I'm not able to work out but 30-45 min before I'm ready to pass out and/or throw up. My menstrual cycle's going crazy too (more than usual).

Sorry if any of that's TMI, but I'm feeling not a little lost in this new world and was hoping some of you could clear up some of this confusion I'm feeling. What did you experience after going gluten-free?


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



Celiac.com Sponsor (A8-M):



Nadtorious Rookie

The first couple of weeks were great-minus the whole "oh my gosh, I have a disease" aspect. Then I started having accidents a lot. It was really frustrating the first 6 months to year. I was anemic, so I would get tired all the time-any strenuous activity for more than 15 minutes and I'd need a snack (and then another 15 minutes later). I didn't get my period for almost 4 years, and it started within a week of going gluten free. My lymph nodes stopped being swollen all the time. I became lactose intolerant. I got really depressed, then better.

Looking back, the first year of diagnosis really sucked, but I guess we all go through it. Stick in there---After a while your body will heal and being gluten free won't be the big deal it used to be.....

Take care-

Nadia ;)

pixiegirl Enthusiast

For my first week of gluten-free (i've only been gluten-free for 4 weeks now) I was exhausted but I wasn't eating any carbs then either.... now I've added back rice and potatoes and such and that seems to have upped my energy level some.

I think you have to remind yourself that this is a process, most of us ate gluten for years when we shouldn't have so I feel it will take a while for me to feel totally wonderful again. However for me, the intestional symptoms were so bad that just that alone being better is enough for me. For the past 8 years I swear I've spent half my life in the bathroom. I'm done with that now!!

Susan

FreyaUSA Contributor

When first going gluten-free, many people tend to just cut out all the gluten containing foods, not necessarily replacing them with anything. What you're describing, the energy loss, tiredness, etc., is very common for people who cut carbs from their diets. You're not giving your body the easy energy it's used to! Adding to that, with celiac disease, you probably aren't digesting foods very well in first place. You need to give yourself something to replace the breads and such that you are used to feeding your body (especially when exercising) to keep your energy levels up. If you're not interested in simply replacing gluten filled foods with non-gluten replacements (expensive, btw, and not always satisfying) try changing your diet somewhat. Eat more beans of all kinds (beans seem to fill the same nitch that grains do in filling and providing energy.) If you're not interested in low carbing it :P, you will need to find something your body can use to replace the carbs you are no longer eating.

Maybe there is a forum for people who exercise a great deal that also follow a gluten-free diet that may have menu suggestions or pre, during and post exercise food ideas?

Good luck!

Nadtorious Rookie

I exercise quite a bit-started right around the time I was diagnosed-and the best thing I've found is white rice and a little olive oil an hour or two before activity, plus some kind of fruit or juice before and/or during. Just being diagnosed, you're probably still very anemic-have you gotten blood tests done at all? Anemia will sap your energy pretty quick. Rice might bug your tummy a bit in the beginning-that's why I always ate it with a little oil. Being freshly diagnosed, you also might not be able to digest fats and complex carbohydrates well either, or tolerate lots of high fiber foods. I know a lot of people who have had success with digestive enzymes (they help your body break down a lot of nutrients and will help with bloating). Hope this helps! Staying active will help you tons with your recovery!

Nadia B)

OhNoes Rookie

I'm pretty sure I'm not digesting fats well (or much of anything else for that matter). The anemia thing might be something to look into as I've always tended toward that. Lately it seems a lot of things bother my stomach so I either drink water, eat rice or bland veggies.

I ate a metric ton of carbs before (almost always complex tho), so maybe what I'm feeling is, like you said Freya, coming down off of that.

I started taking raw sauerkraut to help put good bacteria back into the system. We'll see what happens...

Thanks!

kvogt Rookie

Be careful about adding a lot of exotic foods to your diet. They can cause you discomfort and you could perhaps have food reactions to them, too.


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



Celiac.com Sponsor (A8-M):



saraxi1 Newbie

The most noticeable side effect I experienced was my sugar cravings going through the roof! I have a sweet tooth to begin with. When I cut out all the gluten products (i.e. carbs, bread) my body started to crave sugar like I never have before!

It is most definitely a process. You body has to balance itself out and you have to balance out your diet. It took me almost 6 months before I started to really eat a balanced diet again. I had to force myself to find alternative foods and new favorites. I have to remember to eat a balanced diet.

The other thing that I have found to be the best help is exercise!! Working out helps to flush the system and regulate things. I feel SO differently when I am working out regularly versus when I am not.

I have been gluten-free for a little over a year and I am still learning what works for me. It seems that it is different for each individual. I reccommend cutting out as much as you can and working to re-introduce things one at a time. It's not fun to guess, but after a while you will balance out and be eating and feeling better.

judy05 Apprentice

Hi,

It took me 9 months to actually start feeling better.

Because I was diagnosed in my early 60's, I had been

sick for a long time. Also I stubbornly refused to stop

dairy, I kept trying soy, rice, goat's milk. When I

finally gave up dairy I started to really feel better,

no more joint pain, sinus headaches, foggy head feeling.

Keep at it, there is a light at the end of the tunnel, not

exactly a rainbow but a light. You do feel worse instead

of better in the beginning.

OhNoes Rookie

REALLY good to hear. Thank you!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,351
    • Most Online (within 30 mins)
      7,748

    blacksilkroses
    Newest Member
    blacksilkroses
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.