Worsening symptoms post diagnosis

[mBird99]

Hi

I was diagnosed with Coeliac disease in early February 2020. I was diagnosed after positive blood test and scope after I having experienced diarrhoea (annoying, but not serious), gas, bloating, pain etc.

 

Since beginning the gluten-free diet, while on the whole I can feel a difference, I also determined I was lactose intolerant because I could find a link between the two, which I understand is quite common for those with celiac disease, as I was still feeling some of the above mentioned questions. 
 

However, despite being extremely careful and eliminating gluten from my diet, and now lactose (mostly), I still have some bad diarrhoea (WORSE than before I was gluten free) and sometimes gas and pain (pain often after eating). 
 

I fully intend on seeing my doctor soon, but thought I would see if there was anyone else who notices worse diarrhoea after going gluten free. I am just not convinced celiac disease is all that is going on. I realise it can take a while for symptoms to take a while to go away given I need to heal but seriously the diarrhoea is absolutely nasty now.. 

 

thanks

 

M

[cyclinglady]

Chances are you have had a gluten exposure since you are a newbie.    It takes a while for celiacs to master the gluten-free diet.  Most adult celiacs take about a year to heal.  

Once you stop consuming gluten and then reintroduce it (either through cross contamination or accidentally consuming gluten), the result can be severe.  This happened to me.  I ate lots of gluten before my diagnosis.  Anemia was my main symptom.  Once gluten free, if I had an exposure, I would get GI symptoms.  

Look to your diet.  Do you eat out?  It is so easy to misread a label, so consider avoiding processed foods until you feel better.     Ask your doctor for follow-up testing (3 month, six month and annual) to see if your celiac antibodies are trending down.  Keep a food journal.  Additional intolerances are common (besides lactose).  

Remember, we are talking about autoimmune.  Gluten just sets it off.  How long your reaction or flare up depends on the individual.  Those with lupus or Rheumatoid arthritis do not know the trigger like celiacs.  😥

[DebJ14]

Your intolerance to lactose may actually be an intolerance or allergy to the protein casein that is found in dairy products.  My doctor told me that the protein casein is very similar to the gluten proteins.   Try cutting out ALL dairy and see if it helps.  

I also have to agree that it takes a while to master the gluten-free diet.  My doctor went one step further and banned all grains, not just wheat, barley and rye.  Many of the other grains also contain gluten like proteins to which celiacs can react.  I have replaced all grain based flours with almond and coconut flour, and had excellent results. 

If you are eating processed foods that have a gluten-free label slapped on them you could be ingesting much more gluten than you think you are.  They are allowed in the US to contain 20ppm.  If you eat multiple servings of multiple commerically prepared gluten-free products, you are getting way too much gluten yet think you are eating gluten-free.

I found that when I confined my food to grass fed meats, organic free range poultry and eggs, wild caught fish, and organic fruits and vegetables and organic olive oil and coconut oil that I prepared in my own kitchen, all of my symptoms disappeared.  It does take a while for the gut to heal. 

Also, your immune system has been very busy going after gluten for all these years.  When freed from that task, it often goes after other foods that you are sensitive to.  I recommend getting tested for food sensitivities(Elisa blood test for IgM antibodies to food) and cutting out those foods for a long period.  When your gut is healed you can try introducing them, one at a time.  I learned that I was highly sensitive to yeast of all types so the gluten-free bread and beer was making me worse.  I also had to permanently cut out chocolate, cod, clams, blueberries and cranberries.  Most of the other foods that I was sensitive to on the test (23 in total) I can tolerate, but only if I eat them once in a while.  

For me a totally gluten-free/CF and yeast free diet is what works.  If I eat any of them, I have projectile vomiting and explosive diarrhea within 30 minutes.  All incidents have been because of food eaten outside my home.  I have no trust in restaurants whatsoever because they say anything to make a sale, even if they have no idea what they are talking about.

 

[mBird99]

Hi both

Thanks for your responses, I appreciate the time you took to write back to me.

It sounds like perhaps I am expecting things to be fixed a little faster than is reasonable. I guess I am just eager to get back to normal.

I guess what threw me was that I did feel much better initially, but am now back to nearly how I was before gluten-free.

I don’t eat out at all because I wanted to get it under control before I started testing out some places. I prepare all of my meals at home so that there’s no risk of CC at work, other places etc. I live by myself so no other gluten consumer around me. All foods I buy are either labelled gluten free or does not contain/may contain if not labelled gluten-free. In Australia our gluten free label may only be used if no gluten is detected (versus US <20ppm). On top of that, I don’t eat much of anything that is processed anymore. I eat a lot of fresh vegetables, fruits, meats, and have now cut out all lactose. I want to keep dairy in my diet for calcium, but have only consumed LF milk/yoghurt. Basically, despite being new to this, I am relatively confident I am not accidentally consuming gluten. 
 

I am going to take the advice above and record down what I have been eating. I haven’t been able to see a dietician yet as hospital isn’t running those appointments given COVID-19 situation. 
 

I am also worried I could have another GI disorder on top. I have anal fissures and skin tags (sorry, TMI!) that are causing discomfort, and I feel like for someone who hasn’t given birth and is only mid-20s it’s a bit odd. I note this isn’t an overly common thing for coeliac either...  This is in addition to the diarrhoea and repetitive bowel movements each day. 
 

Maybe I am just being a hypochondriac but I’ll definitely look into what else I can do about my diet in the meantime. 
 

thanks

 

m

[cyclinglady]

You should follow-up with your doctor.  
 

Just keep in mind that you are more susceptible to developing additional disorders like thyroiditis, inflammatory bowel disease, etc.  however, you are still a newbie, so many things can resolve, but it takes time.  Lots of time.  Most members  report feeling better at a year.  Yes, that is right, a year.  Mostly this is due to accidental gluten exposures and trying to identify additional food intolerances due to a leaky gut (yes, it is a real thing and not some hokey stuff on the internet).   Google Zonulin, which was discovered by a leading celiac disease researcher.  These Zonulin are the gatekeepers of the gut.  For celiacs, we have to many and they can keep the “gates” open too long causing systemic havoc.  Some food intolerances resolve (like I can have lactose now) and others may not (no garlic or onions for me despite completely healing from celiac disease).  

Hang in there!  Be patient, but keep a watchful eye out.  Listen to your gut.  😆  You are NOT a hypochondriac!  

 

[gluten-free man in Utah]

On 6/10/2020 at 7:20 PM, mBird99 said:

Hi both

Thanks for your responses, I appreciate the time you took to write back to me.

It sounds like perhaps I am expecting things to be fixed a little faster than is reasonable. I guess I am just eager to get back to normal.

I guess what threw me was that I did feel much better initially, but am now back to nearly how I was before gluten-free.

I don’t eat out at all because I wanted to get it under control before I started testing out some places. I prepare all of my meals at home so that there’s no risk of CC at work, other places etc. I live by myself so no other gluten consumer around me. All foods I buy are either labelled gluten free or does not contain/may contain if not labelled gluten-free. In Australia our gluten free label may only be used if no gluten is detected (versus US <20ppm). On top of that, I don’t eat much of anything that is processed anymore. I eat a lot of fresh vegetables, fruits, meats, and have now cut out all lactose. I want to keep dairy in my diet for calcium, but have only consumed LF milk/yogurt. Basically, despite being new to this, I am relatively confident I am not accidentally consuming gluten. 
 

I am going to take the advice above and record down what I have been eating. I haven’t been able to see a dietician yet as hospital isn’t running those appointments given COVID-19 situation. 
 

I am also worried I could have another GI disorder on top. I have anal fissures and skin tags (sorry, TMI!) that are causing discomfort, and I feel like for someone who hasn’t given birth and is only mid-20s it’s a bit odd. I note this isn’t an overly common thing for coeliac either...  This is in addition to the diarrhoea and repetitive bowel movements each day. 
 

Maybe I am just being a hypochondriac but I’ll definitely look into what else I can do about my diet in the meantime. 
 

thanks

 

m

I also have a fissure in a most undesirable place that is going to require surgery, and tes IU have celiac, so it must not be too uncommon. I am just not looking forward to the surgery 😞

[cyclinglady]

6 hours ago, gluten-free man in Utah said:

I also have a fissure in a most undesirable place that is going to require surgery, and tes IU have celiac, so it must not be too uncommon. I am just not looking forward to the surgery 😞

I hope your surgery goes well.