Should I Have Improved By Now/possibly Not Gluten?

[beadgirl]

Hello everybody!

 

So I went on the gluten challenge for nearly 3 months, and ended up with negative blood tests and biopsy (only 4 biopsies were taken unfortunately). I reacted really badly to the diet though, and although my gastroenterologist couldn't say 100% it was gluten (as opposed to say, fructose malabsorption), he advised I go gluten free.

 

I have now been gluten free for 8 weeks, and other than less frequent cramping and less fatigue, I am not improving. I have a very good diet with minimal processed food, minimal dairy and a lot of vegetables. I don't think my diet has a significant amount of fructose.

 

My symptoms continue as followed:

 

A mix of constipation and diarrhoea (mostly constipation)

But always soft, greasy, smelly stool (sorry if TMI but it worries me... colour is normal)

Persistent pain lower right abdomen (right ovary is normal), often accompanied by hardness (doctor said this is most likely due to the constipation) as well as pain in other parts of colon (but not persistent like the right side)

Indigestion/reflux/nausea/bloating

If it's of any relevance, I have a gastric polyp with no obvious cause.

 

If anyone can help me, it would be greatly appreciated. I'm in my 20s with no family history of any GI type disease or cancers. My mum is lactose intolerant and has mild reactions to fructans, and I have issues with some fructan foods like onion too, but I try to avoid them.

 

EDIT: Forget to mention that before the gluten challenge I was switching between gluten-free/gluten light and my digestive system was more or less normal - with occasional exceptions on gluten light that made me do the challenge.

[nvsmom]

Some people recover to normal within weeks and others take months.  I had a lot of constipation and hardness (but on the left where my colon is) that did not improve until I was 9 months gluten-free and my hypothyroidism was being treated better.  I'm not sure if it was that I was gluten-free longer enough of not being hypothyroid that helped stop the C.  Hypothyroidism can slow your metabolism by a LOT, and cause bloating, C and other problems.

 

Could it be hypothyoidism?

 

Those with celiac disease often have a lactose intolerance which can last well over 6 months after going gluten-free.  Milk yogurt, soft cheese, and icecreams are often really hard on a recovering gut, even in small amounts.

 

Doctors not suspect that some people who assume they have non-celiac gluten sensitivity (NCGS) may actually have issues with FODMAPs.  Gluten containing foods are excluded in the FODMAPs diet, but for those with FODMAP issues, going gluten-free isn't  enough.  Perhaps look up the diet and see it it could apply to you.

 

Otherwise I would say to give it more time.  many people take 6 months or longer on the gluten-free diet before they see real improvement.... Makes it hard to stay gluten-free.

 

Hang in there.

[beadgirl]

Hey nvsmom, thanks for the reply.

 

My thyroid has been tested a number of times, so I don't think that's an issue, although I haven't had it tested recently so I will. I didn't experience as much constipation on the gluten challenge for the first fews months, but towards the end and especially now it's ridiculous and nothing really helps!

 

I'm not sure if I'm lactose intolerant, but dairy has always caused sinus and ear issues for me, so I avoid it. Usually I only have the occasional Greek yoghurt or hard cheese. Would hard cheese be an issue too?

 

FODMAPs are definitely my next step, if this continues

 

Hanging in there...

[nvsmom]

Hard cheeses are usually okay for those with lactose intolerance but some find it bets to give it all up for a time.  I gave up all dairy for close to a year and now can eat hard cheese. (Yeah!)  Yogurt could be hard on you though.  

 

Remember, 8 weeks is still really early in your recovery, although it may feel like forever.    At 2 months gluten-free, some of my symptoms took a huge downturn and I was convinced that I had lupus or some other autoimmune disease. Nope.  I was just still in recovery.  many celiacs are still making autoantibodies after 6 months gluten-free, it really can take celiacs and those with NCGS a long time to get well.  

 

Perhaps keep a food and symptoms journal and give it more time.  Perhaps you'll find patterns of foods that bother you and you can cut those out too.

 

Best wishes.

[JazzyJake]

I've been gluten-free for nearly 6 months with the same results as you- some improvement with fatigue, dreadful constipation. I call this the no-poop diet .

If you have been taking proton pump inhibitors (PPI) for acid reflux, they could be the cause of stomach polyps - they likely caused mine. I have come to believe that PPIs are unsafe and have eliminated them.

I've had unexplained pain in the lower right abdomen for years - no apparent urologic cause. Not appendix either. It's very interesting that you too have that. I would love to know if you find a cause. My doctors have no idea.

[beadgirl]

Thanks very much for the replies!

 

JazzyJake, that name is extremely appropriate for this diet!

 

I haven't take any PPIs, so my polyp is a mystery, but my doctor isn't concerned and he said they generally go away by themselves (they are different from colon polyps which can turn cancerous, apparently). I think it is an indication that I was having trouble with the food I was eating anyway.

 

My gastroenterologist said that the lower right side/ascending colon area is the first to be impacted by constipation, and mine varies depending on how bad it is, so I'm sure it's the reason, but of course it unnerves you when it persists so often!

 

Good luck with your diet, I hope you see some change soon - 6 months is a long time Do you take probiotics? I've started taking them and they're helping a little.

[Feeneyja]

Have you been tested for SIBO (small intestine bacterial overgrowth?). My daughter had the same symptoms and tested positive for SIBO. Being treated for SIBO didn't clear up all of her symptoms, only gluten free did that. I'm of the opinion that the gluten created the environment for the SIBO.

[nvsmom]

My gastroenterologist said that the lower right side/ascending colon area is the first to be impacted by constipation,...

 

I did not know that.  Thanks for sharing it.  

[beadgirl]

Hey Feeneyja, I haven't. How do I get tested?

 

nvsmom, no problem!

[Feeneyja]

Her GI doctor ordered the test. It's a hydrogen breath test. We do not produce hydrogen, but bacteria do. And bacteria do not belong in your small intestines. At least, not many of them. The test is simple. You eat a diet devoid of fruits, veggies and most grains for a day, then fast. You drink a special sugar drink then breath into collection tubes every so often over a specified time. Based on hydrogen levels, they can figure out if there are bacteria in your small intestines. We did the test at home and mailed it in for analysis. Results back in a week.

SIBO is treated with antibiotics.