Other food intolerances

[flowerqueen]

Hi everyone, I was just wondering how common it is for people to develop food intolerances after being diagnosed with coeliac disease? I have had coeliac disease for a few years now, but recently have become intolerant to quite a few other things.  I was already having problems with diary, for about a year before being diagnosed, but now,, I'm having problems with soya, sugar, yeast, coffee, gluten free/dairy free chocolate and a few other things I'm still trying to pinpoint with the aid of a food diary. I'm getting to the point where I'm wondering what I dare actually eat. 

Is this common? I'm beginning to feel like a freak of nature

[cristiana]

Hi - I don't know of any statistics but have just had to have a sigmoidoscopy because I get terrible lower left quadrant pain, near my hip,  which feels like wind that builds up over the day.  My gastroenterologist didn't expect to find anything through this test and he was right - all normal.   He thinks it is either lactose intolerance or IBS, annoying as the pain only started a year after going gluten free.

I do find dairy affects me but I think other things too, am thinking about trying the fodmap diet.

Open Original Shared Link

[flowerqueen]

Thank you Cristiana, that is very helpful! I've had a look at the link and it is very informative. It's one of the best FODMAP explanations I've seen.  

[cristiana]

You're welcome, Flowerqueen.  I hope you get the answers you are after.  The problem that you and I and people like us are faced with is which other diet to follow, if we find ourselves in pain again. very bewildering but perhaps this is a good place to start!

[flowerqueen]

Yes, it looks a good place to start.  Sometimes I get to the point where I've taken so much out of my diet, that there's not much left, and if you're 'barking up the wrong tree', you don't know what to do for the best 

[LorriNielsen]

Ask your GI Doctor to test you for SIBO (small intestinal bacterial overgrowth). SIBO make you have many food intolerances and is very commonwithceluac disease. 

[manasota]

I developed many food intolerances after being diagnosed with Celiac and going gluten free.  Dairy, grains, nightshades, almond flour(oxalates), and possibly others I've yet to identify.  None of these bothered me prior to diagnosis.  I was diagnosed 6 years ago and only recently identified these.  I tried eliminating these 4-5 years ago with no benefit.  Luckily, I tried again.

[flowerqueen]

How do they test for this Lorri? 

[flowerqueen]

Hi Manasota, when you said luckily you tried again, does that mean you are symptom free now? I had one or two intolerances before but nothing like I have now. These have developed since I've given up gluten and wheat.  

[manasota]

Flowerqueen,

Sadly, I am not symptom free.  However, all my symptoms  (of which there are many), are lessening.  It has been a long, hard, frustrating, lonely road.  Lots of research.  (I'm totally sick of all the research.)  I remind myself frequently that I am lucky to have access to the internet and all the information it affords me.  You are the only one I've encountered who has had multiple intolerances show their ugly face AFTER going gluten free.

My doctor suspected I had SIBO as I had an elevated folate blood level.  I just completed 2 courses of XIFAXIN and that has also helped.  Nothing has really been a "cure".

I have not yet totally gone off the almond flour.  I understand it's better to wean oxalates.  At least that's what it said in an article on this site; so I'm trying it.  I'm hoping for more improvement.

(LOVE your homage to Paris!)

[flowerqueen]

Hi Manasota,

'You're right about it being a long, lonely road.  I too have done much research, a lot of it is conflicting advice or confusing.  I go round and round in circles trying to find answers. I take acidophilus daily to try and normalise and balance 'friendly bacteria' in the gut.  Some of my intolerances did start before being diagnosed with coeliac disease, but a lot more have appeared since

I notice you have CFS; I have fibromyalgia, which comes under the same umbrella as CFS. I was wondering if that is the link, rather than the coeliac disease. I'm exhausted trying to find answers, as I'm sure you are too, but what else can you do? 

[manasota]

Hi Flowerqueen,

My new GI doc only recently pronounced me to have CFS.  It is the same fatigue I've had for 6 years, and which started AFTER going gluten free.  

My husband had been diagnosed years ago with fibromyalgia.  This has disappeared since he went gluten free (so our household could be totally free from gluten).  He's been pretty scared about how sick I've been.  I lost my career and most normal activities due to the fatigue.

As far as probiotics, I took acidophilus for years and thought it helped.  Lately, I've tried Florajen 3 and Country Life probiotics as both have been recommended on this site.  My GI doc (who trained at the Chicago Celiac Ctr) maintains there is no way to ingest enough probiotics to make a difference in our guts.  Most recently, I've tried going without any probiotics and notice no difference.

I do feel the Xifaxin helped with my Buddha Belly and MAYBE, POSSIBLY SOME with the fatigue?  I'm waiting to see how things go now.

[flowerqueen]

Hi Manasota,

I have wondered for some time, if probiotics actually made a difference.  I suspect a lot of us in here want to feel like we are doing something positive to help our situation. 

I too, have been unable to work for sometime due to chronic health, and it can be very scary, I agree. I feel like I swing from one condition to another, each taking it in turn in causing perplexing symptoms and problems. 

It's that we have such a good support network on here

 

[LorriNielsen]

To test for SIBO, you drink a glucose containing solution (usually Lactulose) and they measure the amount of hydrogen and methane in your breath.  High levels of hydrogen and/or methane mean you have bacteria in your small intestine (you should only have bacteria in your large intestine). As the bacteria digest the Lactulose they create the gas.  The entire test takes 2-3 hours and they measure your breath every 15 minutes.  Look on Facebook for the SIBO group.  There is good information on this site and you can talk to others with celiac.  

[icelandgirl]

Hi Flowerqueen... ((((hugs)))) for your frustration.  Know that you are not alone as many people seem to have ongoing issues even while maintaining a gluten free diet.  

When after 6 months gluten free I was still having a lot of gut issues, I gave up soy and dairy.  That helped some, but I was still constantly bloated, uncomfortable and having D.  I started looking into other things that cause these symptoms and found 2 additives that were in things I was consuming that caused these types of issues for some people: inulin and carageenan.   Once I cut out the foods that had those, my symptoms improved.  

I still do have problems with oats, broccoli,  cauliflower,  cabbage and brussel sprouts.  If I eat any of those I have severe digestive distress.  The last 4 are all high in FODMAPS so I have a suspicion that I may have an issue with some FODMAPS.  I have been able to get some dairy back and I'm so thankful for that...but I can't have too much or I end up in the bathroom.

I hope you figure out something soon and feel better!

[jrlaird]

Hi everyone,

I just wanted to chime in and say that I too developed multiple food intolerances after my Celiac diagnosis and giving up gluten. The first to go was dairy, quickly followed by eggs, and now it's also soy, peanuts, quinoa, rice, corn, caffeine, and xanthan gum (to some degree). 

When you say trying to figure it all out is a "long, lonely road", that resonates with me so much. I couldn't say it any better. What happened to me is that because I had substituted foods I could eat for the ones I no longer could, I began ingesting too much methionine (an amino acid found in meats, beans, and more) and my gut wasn't properly digesting it and that has led to high homocysteine levels in my blood. This is not good; it can lead to heart disease, and in fact, I had begun feeling more short-of-breath and like someone was squeezing my heart at times. I'm now taking a methylated B-vitamin to help lower my levels. 

All in all, I'm over it too. I just want to feel good again. It's so consuming to have to think about this on a daily basis. I miss my old life.

Jonathan

[flowerqueen]

Thanks Lorri, Inwill take a look at that

[flowerqueen]

14 hours ago, icelandgirl said:

Hi Flowerqueen... ((((hugs)))) for your frustration.  Know that you are not alone as many people seem to have ongoing issues even while maintaining a gluten free diet.  

When after 6 months gluten free I was still having a lot of gut issues, I gave up soy and dairy.  That helped some, but I was still constantly bloated, uncomfortable and having D.  I started looking into other things that cause these symptoms and found 2 additives that were in things I was consuming that caused these types of issues for some people: inulin and carageenan.   Once I cut out the foods that had those, my symptoms improved.  

I still do have problems with oats, broccoli,  cauliflower,  cabbage and brussel sprouts.  If I eat any of those I have severe digestive distress.  The last 4 are all high in FODMAPS so I have a suspicion that I may have an issue with some FODMAPS.  I have been able to get some dairy back and I'm so thankful for that...but I can't have too much or I end up in the bathroom.

I hope you figure out something soon and feel better!

Thanks for the info Icelandgirl.  It sounds like there are more people than I originally thought, with the same problems and frustrations that I'm going through.  It's such a pain as there are so many foods that need eliminating, which begs the question, what on earth is there left to eat? It's hard to eliminate these foods and replace them with others and still get the right nutrition.  I take a lot of supplements to try and rectify this. 

[flowerqueen]

3 hours ago, jrlaird said:

Hi everyone,

I just wanted to chime in and say that I too developed multiple food intolerances after my Celiac diagnosis and giving up gluten. The first to go was dairy, quickly followed by eggs, and now it's also soy, peanuts, quinoa, rice, corn, caffeine, and xanthan gum (to some degree). 

When you say trying to figure it all out is a "long, lonely road", that resonates with me so much. I couldn't say it any better. What happened to me is that because I had substituted foods I could eat for the ones I no longer could, I began ingesting too much methionine (an amino acid found in meats, beans, and more) and my gut wasn't properly digesting it and that has led to high homocysteine levels in my blood. This is not good; it can lead to heart disease, and in fact, I had begun feeling more short-of-breath and like someone was squeezing my heart at times. I'm now taking a methylated B-vitamin to help lower my levels. 

All in all, I'm over it too. I just want to feel good again. It's so consuming to have to think about this on a daily basis. I miss my old life.

Jonathan

 

3 hours ago, jrlaird said:

Hi everyone,

I just wanted to chime in and say that I too developed multiple food intolerances after my Celiac diagnosis and giving up gluten. The first to go was dairy, quickly followed by eggs, and now it's also soy, peanuts, quinoa, rice, corn, caffeine, and xanthan gum (to some degree). 

When you say trying to figure it all out is a "long, lonely road", that resonates with me so much. I couldn't say it any better. What happened to me is that because I had substituted foods I could eat for the ones I no longer could, I began ingesting too much methionine (an amino acid found in meats, beans, and more) and my gut wasn't properly digesting it and that has led to high homocysteine levels in my blood. This is not good; it can lead to heart disease, and in fact, I had begun feeling more short-of-breath and like someone was squeezing my heart at times. I'm now taking a methylated B-vitamin to help lower my levels. 

All in all, I'm over it too. I just want to feel good again. It's so consuming to have to think about this on a daily basis. I miss my old life.

Jonathan

Hi Jonathan,

I know what you mean when you say you want your old life back.  I feel that way too.  

I almost forgot, I can't tolerate quinoa as well. I found some interesting facts on the internet regarding quinoa, it said that the protein in it can cause a similar immune response as gluten in some coeliacs.  It's really odd that it isn't the same for all coeliacs though. (A bit like oats.)

You make a very interesting point regarding high homocysteine levels! I will definitely look into this.  It's particularly important if we want to reduce our risk of heart disease! I usually take vitamin B too, except with all the confusion I stopped taking them the other day, as I suspected them being a culprit of some of the symptoms, but I guess it was due to other things instead. (It's all turning into a mine field of pitfalls.)

I wish you luck in your quest for some semblance of normality. 

 

[fergusminto]

I see a number of fellow sufferers have already contacted you but just to add to what they have said, I was diagnosed 6 years ago and over that period I have become intolerant to: All dairy, Eggs, Soya, alcohol, sulhites (in fact all chemical preservatives which means I cannot eat processed ham, bacon etc) and a few other silly ones!

I now make my own bacon and cook evrything from basic ingredients - no "carry-outs" or junk food at all. Difficulty eating out but you soon get to know those establishments whom you can tell exactly what you want as it is not on the menu!

Symptoms of eating any of these include headaches, tiredness, irritability and muscle pain especially in the neck.

It does, however, more positively, make you more aware and interested in good food and how you can make your own instead of buying in ready-processed food.

One other point - I am no lover of processed "Gluten-Free" food you see so much of advertised in Coeliac Association newsletters and websites and stores - have a good look at what is in them! Full of sugar and stuff you may never have heard of.

Hope this helps.

[cristiana]

Hi again - I have just caught the beginning of a programme which dealt with food adulteration.  You and Yours, BBC Radio 4. (22 Feb 2016).

Open Original Shared Link

If you are in the UK I think you can listen to it by clicking on the above link.   It starts around 8 minutes in.  It really made me think - the contributors were saying if I remember correctly a cup of hot chocolate (I imagine they are talking about instant) can pass through 31 odd stops in the food supply chain before it reaches the cup.   Now for coeliacs this could cause real problems because presumably if someone wants to tamper with the food somewhere along the line to introduce, say, wheat, as a bulking agent, we are in trouble.   

I should hasten to add that this broadcast was not aimed at coeliacs but it made me think it is probably another good reason to stick, as far as is possible, to whole foods.  I must admit I don't  - but I think I need to!  

"Full of sugar and stuff you may have never heard of" - good point fergusminto.

  

[flowerqueen]

4 hours ago, fergusminto said:

I see a number of fellow sufferers have already contacted you but just to add to what they have said, I was diagnosed 6 years ago and over that period I have become intolerant to: All dairy, Eggs, Soya, alcohol, sulhites (in fact all chemical preservatives which means I cannot eat processed ham, bacon etc) and a few other silly ones!

I now make my own bacon and cook evrything from basic ingredients - no "carry-outs" or junk food at all. Difficulty eating out but you soon get to know those establishments whom you can tell exactly what you want as it is not on the menu!

Symptoms of eating any of these include headaches, tiredness, irritability and muscle pain especially in the neck.

It does, however, more positively, make you more aware and interested in good food and how you can make your own instead of buying in ready-processed food.

One other point - I am no lover of processed "Gluten-Free" food you see so much of advertised in Coeliac Association newsletters and websites and stores - have a good look at what is in them! Full of sugar and stuff you may never have heard of.

Hope this helps.

Hi Fergus,

Thanks for your input.  I pretty much make everything from scratch these days too, as I agree with you about processed foods. I don't eat take away foods either, as it's almost impossible trying to find one that excludes all the things I'm intolerant to as well as being gluten free and wheat free.   Like you say, most gluten free processed foods contain large quantities of sugar, so it doesn't make for a healthy diet. 

 

[flowerqueen]

3 hours ago, cristiana said:

Hi again - I have just caught the beginning of a programme which dealt with food adulteration.  You and Yours, BBC Radio 4. (22 Feb 2016).

Open Original Shared Link

If you are in the UK I think you can listen to it by clicking on the above link.   It starts around 8 minutes in.  It really made me think - the contributors were saying if I remember correctly a cup of hot chocolate (I imagine they are talking about instant) can pass through 31 odd stops in the food supply chain before it reaches the cup.   Now for coeliacs this could cause real problems because presumably if someone wants to tamper with the food somewhere along the line to introduce, say, wheat, as a bulking agent, we are in trouble.   

I should hasten to add that this broadcast was not aimed at coeliacs but it made me think it is probably another good reason to stick, as far as is possible, to whole foods.  I must admit I don't  - but I think I need to!  

"Full of sugar and stuff you may have never heard of" - good point fergusminto.

  

Thanks Cristiana,

I will look for it on BBC iplayer as I've only just read your post.  I try wherever possible to make meals from scratch, like you say, as that way I can control what goes into my food.  It's not difficult to see why so many people have food allergies/intolerances these days.

[manasota]

FINALLY!  I've been scouring this site for 6 years; and I finally feel that I've found my Peeps!  Most on this site say that if you are totally gluten free, and unless you have refractory Celiac, you will get well within weeks to maybe 2 years.  Not so for us.  I always felt they were implying that it was MY fault if I didn't get well.  I don't think they were; but nonetheless, I FELT it was my fault.  Until now!!!

I have proof via blood tests that I am gluten free and I have healed my intestine and my Celiac is not active.  So my continuing issues are something else and NOT my fault.

So, we, on this post, developed new intolerances keeping us from getting well.  Perhaps we fall into a subclass of Celiacs for whatever reason.  I think it may benefit us to share as much info as possible.  I am thinking of posting everything I CAN eat.  If we all do this, maybe we'll be able to enlarge our diet.  Increasing variety should aid in better nutrition.

Is anybody else interested in this?  If so. we should probably start a new post with a more specific title about developing new tolerances AFTER going gluten free--and which keep us debilitated.

Opinions?????

[cyclinglady]

5 minutes ago, manasota said:

FINALLY!  I've been scouring this site for 6 years; and I finally feel that I've found my Peeps!  Most on this site say that if you are totally gluten free, and unless you have refractory Celiac, you will get well within weeks to maybe 2 years.  Not so for us.  I always felt they were implying that it was MY fault if I didn't get well.  I don't think they were; but nonetheless, I FELT it was my fault.  Until now!!!

I have proof via blood tests that I am gluten free and I have healed my intestine and my Celiac is not active.  So my continuing issues are something else and NOT my fault.

So, we, on this post, developed new intolerances keeping us from getting well.  Perhaps we fall into a subclass of Celiacs for whatever reason.  I think it may benefit us to share as much info as possible.  I am thinking of posting everything I CAN eat.  If we all do this, maybe we'll be able to enlarge our diet.  Increasing variety should aid in better nutrition.

Is anybody else interested in this?  If so. we should probably start a new post with a more specific title about developing new tolerances AFTER going gluten free--and which keep us debilitated.

Opinions?????

I am not trying to be a Debbie Downer......So, no antibodies in your blood, but how do you know if you have intestinal healing?  Did you have another endoscopy/biopsy?  Remember, some celiacs are symptom free yet have intestinal damage.  

Good news about being dietary compliant.  That is huge!