2 Years Later And Still Dealing With Major Symptoms...

[luvrdeo]

I've been gluten-free for a good 2 years now since being diagnosed with celiac, and I still have major major symptoms - everything runs through me like water.  My doc has tried numerous pills on me to help (mostly for the colitis) and nothing has worked.  I went strict paleo about 6 months ago hoping that would help...but no.  I feel like this has all gotten worse since my diagnosis, rather than making progress.  Is this the case with anyone else?  It's very frustrating!

[pr40]

have you tried probiotics? combination of  culturelle, bifidus, acidophilus, and align infantis helped me a lot.

[luvrdeo]

have you tried probiotics? combination of  culturelle, bifidus, acidophilus, and align infantis helped me a lot.

yep, tried them all with no luck   hadn't tried a combo of them all though, maybe I'll give that a shot!

[nvsmom]

I'm sorry to hear you are still not well.    

 

I had the opposite problem as you, and it really only improved until my hypothyroidism was being treated properly - about 10 months gluten-free I think.  Could it be other issues other than the celiac disease (I'm assuming you are strictly gluten-free)?  some other related problem?

 

I hope you find answers.  

[luvrdeo]

I'm sorry to hear you are still not well.  

 

I had the opposite problem as you, and it really only improved until my hypothyroidism was being treated properly - about 10 months gluten-free I think.  Could it be other issues other than the celiac disease (I'm assuming you are strictly gluten-free)?  some other related problem?

 

I hope you find answers.  

I eat strict paleo, so yes - I am beyond strict when it comes to being gluten-free.  The slightest CC can put me in a tailspin for a good 2 weeks, I think I'm overly sensitive now.  I am a total freak about it to be honest (aren't we all)!  Everything has just gotten so much worse since going gluten-free, which seems so backwards.  My rheumy has tested me for all kinds of other things (had several positive ANA tests) but nothing has come up.  I'm going back in a few weeks to see my gastro doc because at this point, I'm worried that I'm destroying my insides, and that longterm, this could be bad.  Who knows - I was so happy when I got diagnosed with celiac, finally had some answers...and yet I still keep going the wrong direction.  No fun!

[nvsmom]

Definitely not fair.

[HavaneseMom]

Hi luvrdeo,

Sorry to hear you are having major issues after this long. It sounds like you are doing everything right to treat your celiac. It must be very frustrating and exhausting to be sick all the time like that, and for so long. Hopefully your gastro doctor can figure out what's going on and get you the proper treatment.

I saw in your signature that you noted lymphocytic colitis. My mom had colitis that resolved after a while and thankfully hasn't come back in over 20 years, but it was a horrible thing for her to go through. Did your colitis ever resolve? I wasn't familiar with your type of colitis, and when I looked it up it said it's main symptom is persistent watery diarrhea, which you mentioned is a problem for you. Since you are so strict with your gluten free diet, I wonder if the colitis could be causing you so much trouble?

I hope you find your answer and will feel better soon.

[luvrdeo]

Hi luvrdeo,

Sorry to hear you are having major issues after this long. It sounds like you are doing everything right to treat your celiac. It must be very frustrating and exhausting to be sick all the time like that, and for so long. Hopefully your gastro doctor can figure out what's going on and get you the proper treatment.

I saw in your signature that you noted lymphocytic colitis. My mom had colitis that resolved after a while and thankfully hasn't come back in over 20 years, but it was a horrible thing for her to go through. Did your colitis ever resolve? I wasn't familiar with your type of colitis, and when I looked it up it said it's main symptom is persistent watery diarrhea, which you mentioned is a problem for you. Since you are so strict with your gluten free diet, I wonder if the colitis could be causing you so much trouble?

I hope you find your answer and will feel better soon.

Thank you first off for the kind words!!  It's definitely the colitis I think.  My doc put me on some high-power pills for ulcerative colitis to try and get some healing done, but as soon as I go off of them I go right back to where I was.  I guess you can't stay on the pills long term - it's more for when it flares up.  They told me my last resort is some other med that I have to sign a release on, because it can be highly dangerous.  That's not really something I want to be involved with!  I was really hoping I could find a natural way to get this under control - diet, essential oils, things like that...rather than have to try all of these different pills.  What did your mom do to put hers into remission?

[pr40]

on probiotics: align may be the one you want to try first. read about infantis and you will see the logic. then, slowly you can introduce others.

i assume that your dr put you on a steroid. steroids have serious side effects and some of your symptoms may be attributed to them.

[luvrdeo]

on probiotics: align may be the one you want to try first. read about infantis and you will see the logic. then, slowly you can introduce others.

i assume that your dr put you on a steroid. steroids have serious side effects and some of your symptoms may be attributed to them.

I'll give align a second shot - and go from there.  As for the meds...I've been off them for a good 2 months, could something still be lingering in my system?  The problems I have now, I had before they tried this latest drug...so there's no telling.  Thank you for the great suggestion!

[HavaneseMom]

Thank you first off for the kind words!!  It's definitely the colitis I think.  My doc put me on some high-power pills for ulcerative colitis to try and get some healing done, but as soon as I go off of them I go right back to where I was.  I guess you can't stay on the pills long term - it's more for when it flares up.  They told me my last resort is some other med that I have to sign a release on, because it can be highly dangerous.  That's not really something I want to be involved with!  I was really hoping I could find a natural way to get this under control - diet, essential oils, things like that...rather than have to try all of these different pills.  What did your mom do to put hers into remission?

Hello, Since it was so long ago that my mom had the major colitis problem, I'm not really sure what her treatment was. This was in the early 90's before we had the Internet to research everything ourselves, so I am guessing she probably took whatever pills were prescribed and at that time. I do know she was on anti-D pills for quite a while. I was thinking about it a little more, and she does have random bouts of unexplained D to this day, so maybe she does still have small flares, although very mild and short lived compared to what you are experiencing. I really hope you can find a way to get your colitis under control without having to take the dangerous pills you mentioned. I'm sure it's hard to decide what to do about that when you want to get better, but aren't sure about taking those pills.

Hope you feel better soon :-)

[MGR]

Hi there, I have UC with watery D and blood-and after 20 years of visiting my GI for regular check ups I have found out accidentally that that gluten is one of my major triggers for it. I am supposed to take a medicine called Pentasa all the time to keep it under control, but I refuse to do so because one of its main side effects is that it damages the kidney. I have always kept it at bay with my diet- and have doing a FODMP type of diet- now I still do it, but don't have grains to avoid gluten- and although I always have a tendency for D, it is much better. However, I am extremely sensitive and the slightest particle sets me off. My main challenge is to avoid it greeting so bad that the D comes with blood.

I really feel for you! Big hugs xxxxx

[come dance with me]

Might not be this, but my step mum is coeliac but also suffers malabsorption of fructans, which are present in onion, shallots, leek, garlic, chives, basically anything from the onion family, and also in dried fruit and dessicated coconut.  She can't eat any of those things, on top of not being able to eat gluten.  Might be worth looking outside of grains.

[dilettantesteph]

I had that problem and noticed that it was worsened by high fat and protein.  Digestive enzymes cleared it right up.  The doctor thinks it was pancreatic insufficiency.  That is common with celiacs.

 

https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bpancreatic+%2Binsufficiency

[luvrdeo]

I had that problem and noticed that it was worsened by high fat and protein.  Digestive enzymes cleared it right up.  The doctor thinks it was pancreatic insufficiency.  That is common with celiacs.

 

https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bpancreatic+%2Binsufficiency

Living on a paleo diet, high fat and protein are the bulk of my diet!  I'll look into this - very interesting for sure.  I hadn't heard of pancreatic insuffiency before!

[dilettantesteph]

Me neither until recently.  I wish that I had known long ago.

[luvrdeo]

Makes for interesting reading!  I went a saw a new doctor today, and as a result am having a colonoscopy and endoscopy next week to try and figure out what might be still giving me such issues.  Hoping for anwers!

[lucky28]

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!

[luvrdeo]

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!

Though I am not happy to see this - I am happy to see this!  I saw someone new at my doctors office today, and he was very aggressive which was nice.  He said I have 3 options for what the problem could (possibly) be: 1) some celiacs just don't heal by eating gluten-free, ever; 2) the colitis is just giving me fits; and 3) I have Crohns.  I explained to him that my issues have actually gotten worse (the chronic D) since going gluten-free, and that I am concerned with the long term effects of this??  Anyway, he seemed genually worried, and I'm hoping for more answers.  It is very frustrating, I feel like we've all been through enough already with having to give up gluten, and to not get better is defeating.  Keep me posted, my "procedure" is on Tuesday, and I'll do the same!  I'm glad I'm not TOTALLY alone here!

[nvsmom]

Good luck on Tuesday!

[dilettantesteph]

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!

 

Since you still have flattened villi, I think that you need an even more strict gluten-free diet.  Have you seen this study?: Open Original Shared Link

That's what I have to do, plus a little more strict.

[NatureChick]

If you have that much D, you likely also have vitamin deficiencies, and if they are related to the UC, you could be caught in a vicious cycle. But I'd get tested for them anyway, figure out what you're up against. And finding out if you have vitamin deficiencies could be vital to overcoming any organ-function deficiencies, pancreatic or another.

Before I even read the other comments about it, I also thought additional food intolerances. Fructans / fructose would be high on the suspect list to research further, which is likely to lead you to FODMAP and to glycemic indexes. Lactose? Night shades? Alliums? I'm trying to think of what else I've seen others mention for additional food intolerances.

Also, if you have tried an elimination diet and it is too difficult for you to stick to, look up rotation diet. Works in four-day intervals while keeping a food diary to help find connections.

The only other thing that crosses my mind is to see if eating as non-toxic a diet as you can for a few weeks would help. So organic foods, meats that aren't treated with preservatives, nitrates or nitrites, no artificial colors or flavors - that sort of thing. I have no idea if this would have an effect on UC, but giving it a try could help you figure out if yellow#5 was the cause of your problems. Intolerances to food colorings are incredibly common and they have been linked to gastrointestinal damage.




 

[powerofpositivethinking]

take a look at page 20-21 of this report: Open Original Shared Link

 

it does list the following as reasons for persistent symptoms despite following a gluten-free diet:

 

 

• Inadvertent gluten ingestion (this is the most common reason)

• Wrong diagnosis

• Lactose or fructose intolerance

• Other food intolerances

• Pancreatic insufficiency

• Microscopic colitis

• Bacterial overgrowth

• Collagenous colitis or collagenous sprue

• Irritable bowel syndrome

• Ulcerative jejunitis

• Enteropathy-associated T-cell lymphoma

• Refractory celiac disease

The last three can be regarded as complications of long-lasting celiac disease.

 

I had been following a strict gluten-free diet for a year, but despite massive supplementation, my vitamin D and K levels would only climb a small amount.  I went back to the GI and was tested for fat malabsorption, and then was tested for pancreatic insufficiency and got diagnosed with both.  Now I'm taking Creon in the hopes to jump-start my pancreas.

 

Good luck!

[FruitEnthusiast]

I have also been gluten-free for 2 years, but I'm not better yet. For me other food intolerances have been as big an issue as gluten. I think someone mentioned that they are grain free. I could not tolerate any grains or processed foods from the start. I know there are others who have had the same problem.

 

I don't know if a Naturopathic Dr. or someone like that could help you, by looking at your situation from a more holistic, natural perspective? Mine has been very helpful with taking the right vitamins and supplements, and balancing my diet. I never realized before how serious vitamin deficiencies can be.

 

I know how frustrating it is to keep working at it to try to figure it out. It's like a puzzle and it takes a long time through trial and error to figure out which pieces fit. Just when I think I'm going to lose my mind, I find another piece that fits and it teaches me to never give up in my search to solve this mystery. I believe there are always answers to be found if you keep looking

[pr40]

several posters report that even after going gluten free they are not recovering. I assume you tried many things and want to mention only two just in case you don't know about them. Align is a different kind of probiotic and is frequnetly recommended for rebuilding gut flora for people with IBS. Aparently Aligh has bacteria that resemble flora of newborns, the idea is to start from scretch. During my last flare up, I took it for a few weeks only, until the package run out and saw improvement within a week.

L-Glutamine pills are another thing recommended for the same purpose. I took them for a few weeks as well. I did not see any immediate effects but overall the recovery with them was much faster than recovery when I did not use them.