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

Nearly Two Months Gluten Free - Feeling Worse :(

Kates77

Recommended Posts

Kates77 Rookie
Kates77
Posted

So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

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

Celiac.com Sponsor (A8-M):


VeggieGal Contributor
VeggieGal
Posted

Hi Kates77, I really do understand ... last October I had positive blood tests for celiac so I went gluten free for about 4 weeks (i felt fantastic) but unbeknown to me, I had to have an endoscopy so i had to re-introduce gluten. My endoscopy date got changed twice so I had a miserable christmas as I was trying to hold out until the endoscopy date on 4th Jan. Anyway, in the end they stopped procedure as I was trying to pull tube out but recently confirmed dx due to gene test etc.

For the first 3 months gluten free I was really miserable, spacey, no energy, brain fog, grouchy tummy, flu type symptoms much worse than ever before. I did have a drastic improvement in my vision and itchy scalp within the first 4 weeks but that was all.

I'm now finally starting to see improvements but boy i really know it when ive been glutened. Along the past few months Ive discovered other food intolerances like soy, coffee and dairy and im keeping up with my vitamins, probiotics and digestive enzymes so maybe im now heading in the right direction :) . Have a look at the newbie101 thread.

I've just come back from a mad 80s fancydress weekend and my energy levels kept up with the rest of them :) . I even braved the gluten free food on offer as there was one chef who seemed really keen and knowledgeble to get it right. Infact, when I got home I glutened myself !!

Also, I don't think at first, I was taking it serious about cross contamination, but have since learnt I must be sensitive afterall.

It takes time and patience and they'll be ups and downs but eventually (Im hoping), they'll be more ups !

Good luck

Edited ..to correct my silly spelling mistakes!!

Edited again... just realised, when I mentioned about me braving the gluten free food in a restaurant. That is NOT good advice, please avoid eating out if you possibly can. Try to get used to making your own food (simple wholefood ingredients).

dilettantesteph Collaborator
dilettantesteph
Posted

What was that about doctors pledging to do no harm?  Anyway, I'm really sorry you guys.  My thinking is that you can heal faster with a super pure diet of produce and unprocessed meats and then add those other foods after you are feeling better.  Keep a food/symptom journal and you should be able to notice additional food intolerances too.  Also as mentioned above, you can eliminate soy and dairy during this time.  You can try adding them back later.  Hopefully with a really good diet, you can get better in a couple of weeks.  I am one of those super sensitives, and that works for me.  I am now able to eat diary and my only other food intolerance is oats.  I hope that you feel better soon.

 

One great thing is that you know that you responded to the gluten-free diet initially, so that you know that you are on the right track.

GFinDC Veteran
GFinDC
Posted

Hi Kates77,

 

People do tend to become more sensitive after they have been gluten-free for a while.  You may need to really look close at everything you are taking in, including vitamins and meds, drinks and anything else.   Getting better may take some real basic simple foods for a while.  No or very little processed food can help.  Low sugar and low carbs too.  Recovery from celiac disease damage can be more like a marathon than a sprint.  It takes times and constant vigilance until you get it down.  But recovery is a nice thing when it happens.  So keep going! :)

Kates77 Rookie
Kates77
Posted
  • Author

Thanks guys! I really appreciate the advice. Hopefully I feel better soon :) And good luck to you all on your Gluten-Free journeys :)

rene83 Rookie
rene83
Posted

So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

Oh goodness. I am so sorry to hear that! I am however glad to see your post as I am experiencing a very similar thing. My difference is that I have been gluten free for almost 3 weeks and I am feeling worse and worse but same symptoms as you. I just want to go eat some real good bread and say "to heck with it" just to feel normal again.

 

Please let me know if I can be of any support for you! 

Archived

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

Go to topic listing

  • 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
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.