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

Gf But Fatigued..


solarbound27

Recommended Posts

solarbound27 Newbie

My wife has been gluten free for a little over a month now. For the last couple of weeks she has been feeling a little sick after eating, as well as extremely fatigued in the afternoon and evenings. While she has been free of gluten, she has not cut out dairy. She is taking a pretty good multi vitamin 3 times a day from a distributor/manufacture called True Hope out of Canada. I know her iron levels have been low in the past and I assume that this still might be the case. Anyway, we are both very optimistic that the remaining symptoms (fatigue and the mild sickness) are simply part of the healing process. Is there anyone else who has, or has had similar symptoms throughout their transition from a gluten to non-gluten diet? We simply want to know if it


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

I didn't have any trouble eating but I was fatigued for months and months. It was probably 10-12 months before I fewlt "normal" again. Probably 4-5 months before I could do anything but watch TV after a day of work.

richard

flagbabyds Collaborator

THE Healing process takes a long time and if you cut dairy out of her diet for a while it couldn't really hurt that much. See if she feels better without dairy and then if she does keep it out of her diet but if she doesn't and it is a while later go back to your GI doc and see what they have to say she could have other food allergies or another autoimmune disorder.

burdee Enthusiast

I've been gluten free 11 weeks and dairy free 5 days. I felt a little more energetic when I went gluten-free (possibly because less pain made me feel more like moving around). However, I really noticed a big resurgence of energy when I cut out dairy. Even when I don't get enough sleep (5-6 hours, rather than my usual 8 hours), my MIND is still awake. I don't feel foggy and overwhelmed like I did when I was consuming dairy. I recently received my Enterolab results which said I had gluten AND casein antibodies, so I will keep avoiding both. Less pain seems to give me more physical energy, but no fogginess makes me mentally alert and FEEL energetic all over. :D

BURDEE

Guest gillian502

I felt worse during my first 4 months gluten-free than at any other time in my life. I'm surprised I was even able to hang in there and stay on this diet, but I was very positive for celiac disease and knew I had to try to stay gluten-free to save my own life. After about 4 months, temporarily cutting out dairy, and adding more protein, I felt a little better. After 10 months gluten-free, I still can't say I feel normal on this diet, but I'm better than I was at this time last year, and that's at least something!

ezrab12 Newbie

Hi All,

Can you please let me know what the enterolab test is. I have had the blood tests gor Gluten levels but is that what it is called? or is this something different. I have been on a gluten-free diet since April. My doc took blood tests at the ensd of July and he said everything had dropped by half and positives were negative now but i still feel like crap with numbness and tingling in my arms , hands, legs, feet and sometimes the glands under my ears swell and are painful. If there is another blood test I can take let me know and what is Casein.

Thannks,

Ezrab12

Guest jhmom

Enterolab is a lab run by Dr. Fine, which has Celiac too. It is a stool panel test which is more sensitive than blood and a more accurate way of testing. You can visit their website at Open Original Shared Link

I hope you find the answers you are looking for :)


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



Celiac.com Sponsor (A8-M):



dana-g Newbie

Ezrab 12, are these new symptoms, or the same ones you had when you were eating gluten? Did they just not go away? Casein is a protein found in milk. Are you having any gastro symptoms? If so, you may want to avoid dairy while your gut is healing; often, celiacs find that helpful for a while. Are you the one who also posted about the possible corn allergy, too? Because if you are, you seem to be having enough stuff going on that you may want to keep a food diary. Write down what you eat, when, and any symptoms and when they occur. It is not unusual to "feel like crap" after just a few gluten-free months, unfortunately. I found that it helped to keep my diet as simple as possible at first. Not very exciting, but not as many things to react to, either. Hope you get some relief soon, and keep posting questions--the people here are very helpful and somebody is bound to come up with something useful for you. Take care!

dana-g Newbie

Ezrab (I like that name!) I just found that corn allergy post and it wasn't you, but you may want to do the diary anyway--it really helps give you some clarity. I remember feeling really fuzzy in the head when I was getting the gluten out! Good luck.

tabbiea Newbie

I've been diagnosed for over 5 years. My major sumptom prior to diagnosis was fatigue--not bowel trouble-- but intractable debilitating fatigue. Three days on the gluten-free diet and I work up. It was amazing. Now I have CFS in addition to Celiac Disease but I did have a couple years where I was "normal". Stay on the diet. Make sure you ARE on the diet. Wheat and gluten are everywhere! You must be extremely careful about your diet.

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. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

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

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
×
×
  • 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.