Having similar celiac symptoms a year after going gluten free

[rh13]

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.

 

 

[cyclinglady]

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]

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]

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]

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]

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]

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]

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]

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]

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

[squirmingitch]

 

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

[SarandipityVegas]

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]

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!