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

Having similar celiac symptoms a year after going gluten free

rh13

Recommended Posts

rh13 Newbie
rh13
Posted

Hi, I've posted on here before and everyone's input was definitely helpful so I thought I'd do it again.  

I'm 22 and I was diagnosed with celiac via an endoscopy biopsy a year ago.  After a couple of months of going gluten free, I was feeling really great and, dare I say, pretty close to being back to "normal."  So from about January to July I was feeling well, other than once or twice when I was accidentally glutened.  However, around July this past summer, I started having stomach problems again, including cramps, diarrhea, bloating and heartburn (which I never had heartburn until I got celiac).  

These symptoms are milder than when I had undiagnosed celiac, occurring 1 to 3 times a week, rather than almost every day like before.  But still, they are pretty similar symptoms.  I take immodium and bentyl pretty regularly, maybe overuse of the meds is messing me up.

I got another round of labs done about 2 months ago, and everything came back normal.  Thinking it might be another food allergy, I visited an allergist and they did skin tests and did not find anything.  I am not having any histamine reactions, either, but I never really have from the get go.  Of course, the allergist said that he could not really do much testing, otherwise, as blood work would not detect anything food related.  He pretty much advised to take foods out of my diet to see how I'm feeling and try to narrow it down.  

As careful as I am, I know there is a risk of cross contamination.  However, I didn't think I was THAT sensitive, as back in the winter I accidentally drank a sip of regular beer thinking it was my own, and felt fine the net day.  So I figured that a teeny tiny amount did not really affect me.  I am slightly frustrated in that I was feeling really well and out of nowhere I started slipping back again.  

I have read articles that say that a celiac's stomach is never fully healed, but they always seem gimmicky and promote a really specific diet.  I am skeptical when reading things like, "gluten free diets alone don't work."  But, I can't deny that I am still having issues.  

I am definitely willing to alter my diet in terms of eating more clean, but realistically I don't think I could ever go 100% clean.  I eat pretty well already but, like everyone, I enjoy junk food once in a while and love dining out once a month or so.  At this point, the next step is for me to go back to the gastro, but I wanted to see if I was maybe missing something or not thinking about something else that may be causing this.  

Basically I am wondering if anyone else has experienced something similar to this and if it was due to diet, or maybe another related gastrointestinal disorder.  I am also not sure about which foods to test out removing from my diet.  I went dairy free for a while and I was still having the same issues.  Has anyone had their sensitivity increase after being gluten free for a few months?  Is there a factor I could be neglecting to take into consideration?  Any input would be greatly appreciated! Thanks.

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

You said that your labs were okay, but did that includ the TTG and DGP antibody tests for celiac?  It sounds, based on the symptoms you listed, that gluten might be slipping into your diet.  The blood test would confirm it.  At least it would rule out celiac disease and you could focus on other issues like SIBO, Crohn's, etc.  

bartfull Rising Star
bartfull
Posted

You may be intolerant (not allergic) to something else. If you want to remove the most likely culprits I would suggest corn, soy, dairy, nightshades, and possibly legumes. (I know, that doesn't leave much!) But if you can stick to things like plain meat, sweet potato or white rice, and veggies for a while, and then see if you start feeling better, then you can add back one of these items at a time until you narrow it down.

That of course means you can't eat in restaurants. Even if they are good about gluten there's no way they can make you a meal that excludes all these other things. It's a pain in the neck but as far as I know it's the only way to determine if you have a further intolerance.

manasota Explorer
manasota
Posted

Ditto what  bartfull said!  

I used to think it was a "pain in the neck" to eat 100% clean, avoiding restaurants--till I noticed how much better I felt and how much better my body worked.  Now I think it's a real "pain in the neck" to go to more doctor appointments.  Unfortunately, there is no magic bullet.  I really wish there were.  I'd be the first in line.

cristiana Veteran
cristiana
Posted

I have relapses and apart from small amounts of gluten I am seeing that even pure oats are really a problem for me (I think this is the case in about 10 per cent of celiacs?).   I had some several weeks ago and have had a burning stomach and C ever since(not D, which is what I had at DX) but I also find that things I normally eat without problems will cause pain after eating oats.  I find thinly sliced ginger in hot water really soothes my stomach at times like this.  All so odd as I could eat oats for England before diagnosis!  This has all happened to me before but I thought I would give pure oats one more try as I miss them.

Funny you should mention those articles that we are never really healed - I have seen those too and every time I have a setback I think of them! I don't know how true they are, but I could believe them at times like this!

icelandgirl Proficient
icelandgirl
Posted

Initially I felt much better too, but then felt much worse.  It was very discouraging!  I cut out dairy, soy and corn completely for a while and that helped some.  One thing that I found was really causing  trouble for me was carrageenan...an additive in things like ice cream and almond milk.  Once I cut out everything with carrageenan I felt a lot better.  I am now able to have small amounts of dairy and corn...still no soy and definitely not oats.

The best thing might be to cut down to only whole foods for a bit and see what happens.  Then add in other things one at a time and see if you have a reaction.

I've also found that for me taking a good probotic and digestive enzyme really helps with my overall gut function.

Best wishes to you...I hope you feel better soon!

squirmingitch Veteran
squirmingitch
Posted

Initially I felt much better too, but then felt much worse.  It was very discouraging!  I cut out dairy, soy and corn completely for a while and that helped some.  One thing that I found was really causing  trouble for me was carrageenan...an addictive in things like ice cream and almond milk.  Once I cut out everythingwith carrageenan I felt a lot better.  I am now able to have small amounts of dairy and corn...still no soy and definitely not oats.

The best thing might be to cut down to only whole foods for a bit and see what happens.  Then add in other things one at a time and see if you have a reaction.

I've also found that for me taking a good probotic and digestive enzyme really helps with my overall gut function.

Best wishes to you...I hope you feel better soon!

I'm sure icelandgirl meant to type additive not addictive when speaking of carrageenan. LOL! Happens to the best of us. Happens a lot to me.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Initially I felt much better too, but then felt much worse.  It was very discouraging!  I cut out dairy, soy and corn completely for a while and that helped some.  One thing that I found was really causing  trouble for me was carrageenan...an addictive in things like ice cream and almond milk.  Once I cut out everythingwith carrageenan I felt a lot better.  I am now able to have small amounts of dairy and corn...still no soy and definitely not oats.

The best thing might be to cut down to only whole foods for a bit and see what happens.  Then add in other things one at a time and see if you have a reaction.

I've also found that for me taking a good probotic and digestive enzyme really helps with my overall gut function.

Best wishes to you...I hope you feel better soon!

I'm sure icelandgirl meant to type additive not addictive when speaking of carrageenan. LOL! Happens to the best of us. Happens a lot to me.

squirmingitch Veteran
squirmingitch
Posted

Initially I felt much better too, but then felt much worse.  It was very discouraging!  I cut out dairy, soy and corn completely for a while and that helped some.  One thing that I found was really causing  trouble for me was carrageenan...an addictive in things like ice cream and almond milk.  Once I cut out everythingwith carrageenan I felt a lot better.  I am now able to have small amounts of dairy and corn...still no soy and definitely not oats.

The best thing might be to cut down to only whole foods for a bit and see what happens.  Then add in other things one at a time and see if you have a reaction.

I've also found that for me taking a good probotic and digestive enzyme really helps with my overall gut function.

Best wishes to you...I hope you feel better soon!

I'm sure icelandgirl meant to type additive not addictive when speaking of carrageenan. LOL! Happens to the best of us. Happens a lot to me.

icelandgirl Proficient
icelandgirl
Posted

Thanks so much Squirming...I've corrected it,  but I do wonder why auto correct hates me?!?!? Lol

squirmingitch Veteran
squirmingitch
Posted

 

 I hate autocorrect! It never wants to correct when I transpose 2 letters. :ph34r:

  • 3 months later...
SarandipityVegas Newbie
SarandipityVegas
Posted

I was 28 when I started a gluten free diet to deal with celiac. I have heard that the older you are, you may have to do more than just changing your diet? What else is there to do in order to fully recover? 

Also, off topic. Does anyone else have issues with, when consuming alcohol (obviously gluten free beverages), occasionally getting very red and hot in the face? Also, any scratches/wounds anywhere else on my body, sometimes even scars, turn bright red and get hot. I was wondering if it was possibly related to celiac disease?

manasota Explorer
manasota
Posted

I'm pretty sure you can relax about being at the "old age of 28" at diagnosis.  I was 60.  There are people on this site who were older than me who got well.  Now, for us, it usually does take longer.  Years.

I've not heard of a Celiac having your issue with alcohol.  Maybe somebody else will come along who knows. Welcome to the site!

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. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      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...
    2. 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...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      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...
    4. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    5. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

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

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748
    Gracieruizzz
    Newest Member
    Gracieruizzz
    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

    • 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    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
×
×
  • 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.