GF recovery - now symptoms returning

[Jamf5]

Hi all. Glad to see we have a dark corner somewhere on the Internet.

I've been gluten free since my diagnosis following a biopsy in November and I thought things were going well. Now my symptoms are returning but it can't be (due to my diligence) down to CC.

My stomach is in pain and I've been having diarrhea. Now today, I've suffered with even stronger pain, diarrhea the followed by rectal bleeding with mucus.

I was formerly diagnosed with having hemorrhoids (due to the stress on my insides) and told that was the cause of the bleeding. I'm now stumped as to whether this is just a return of this or whether it's something worse...

Has anyone had a return of symptoms for no apparent reason on the road to recovery?

Thanks in advance! Your support is appreciated.

[Hidden]

Hi there, it takes time for the villi to recover and you could be having a reaction to something else. Also usually after being gf for a while the reaction to gluten is much more dramatic than before and usually include slickness, a headache and the runs.

Another thing that we have to learn is not to blame all stomach upsets on gluten, it's only natural but everyone gets them sometimes.

As you've had hemerhoids before I would'nt go worrying your self and it is easy to have checked by your GP there are things you can do like eat plenty of roughage to help lessen the effect of them.

As for dark corners of the web this usually is about sex, drugs and gangsters...so you're obviously feeling low and being ill is a dark place and only another coeliac understands the fears and anxiety that are part and parcel of having CD. So you have done the right thing in joining us and are in good company so with a bit of luck we will be able to shine some light into that dark corner of yours.

So I hope you feel better soon and any more questions you just ask away,

Jerry

[freelancer]

As you are relatively recently gluten free, is it possible that you are now sensitive enough to react to things that didn't bother you before? I was fine at the beginning then after a while started having low level reactions to dextrose/maltodextrin etc, which hadn't been an issue before. Also beware of low level gluten in things labelled gluten free.

I'd check with the doctor, though.

[Benhealth in reply to freelancer]

I can honestly say in my experience that this is possible. I don't even think anyone has studied it either. There is of course research on desensitisation of allergies etc. However, what we are talking about here is the opposite, becoming MORE sensitive due to lack of exposure. There needs to be more research on it for sure.

[ro127m]

I've had the same experience, and it is distressing when you believe you've solved your problems via gluten abstinence and you get a relapse. In fact my symptoms were quite similar to yours, and I begun to question the whole business of gluten-free and was that really my problem, and it must be something else, otherwise how was I seemingly back at square one? I was tempted to assume it wasn't a gluten issue after all with me and give up on the diet. But thinking more calmly about it I realised that for long periods I was definitely much better with GF, no question, and could anything have possibly slipped through the net? In my case yes I'm now sure it did. for instance carelessness in toasting bread in a general use toaster, roasting nuts in an oven tray used for standard bread making. Silly mistakes but I hadn't been able to believe that I could be that sensitive to cross contamination, but I believe it now. I've had a few relapses, but have mostly been able to eventually figure out by trial and error what the problem was. Sometimes you just don't know and can only guess - eating out for instance (were the chips really gluten free as claimed or did they have a flour based coating as frozen ones sometimes have, for instance) - so there can be be inexplicable lapses, or there have been for me.

So I know you've been diligent but maybe something might have slipped through the net as it has done for me on more than one occasion.

Good luck to you, and don't lose faith with your GF diet, but do also keep in touch with your doctor.

[Hidden]

Hi Jamf5, I experienced almost the same symtoms as you. I felt better almost immediately after going gf and I was absolutely certain I was ceoliac before I got the official diagnosis. But....I continued to have digestive problems. To be honest with you I was so used to them I just put it down to what had been (mis)diagnosed as IBS. I was more bothered by the neurological symptoms of CD: low mood, difficulty concentrating and remembering things. The trigger for me having the tests was low iron stores in the body, not my GI symptoms which GPs had overlooked for decades! I had never really heard about CD until this time last year. I have learned such a lot since I went gf in May!

I have discovered that the digestive problems I had been experiencing we're more related to lactose intollerance. This is because of the damage gluten has done to the villi along the intestinal walls. As my body heals and the villi repair I expect the lactose intolerance to disappear. I avoid cheese, milk and cream on the few occasions when I have had a little of any of these my usual symptoms return. Unlike gluten, the odd bit of lactose won't hurt me, so I now see this as a kind of barometer to my recovery.

I think you would do well to explore whether this could be the case for you. Worth experimenting at least! If you do think you may be lactose intollerant (for now), make sure you get calcium in other ways as it is essential to bone health and daily living. If you don't get enough through diet or supplements your body will draw it out of your bones on the same way that it depletes iron stores in the body if there isn't enough iron in the blood.

At least if you test it out for a week or so and you see an improvement you will have something to discuss with your GP or dietician.

All the best! Maggot