Recovery Symptoms

[polomarco]

I would be interested in some feedback regarding post-gluten symptoms and what to expect re: intestinal recovery. I have been very gluten free for about 1 1/2 months and noticed a huge improvement in mood, energy and muscle/joint aches. However, no matter what I eat (non gluten) I am still experiencing bloating, distension, gas and other intestinal discomforts, which are very uncomfortable.

My blood tests for celiac were negative, but I have no other explanation for the improvement after going off gluten;can't see eating gluten again. I'm looking into other causes of my continuing symptoms such as dyspepsia, IBS, parasites, bacterial overgrowth, etc. but it's a bit tricky and time-consuming. I may have a precautionary colonoscopy and repeat upper endoscope (which was negative 3 years ago when my symptoms began).

I would be interested to know what continuing symptoms have been experienced by others during the "recovery" phase. What happens in the 6-12 months while an adult recovers and what can be done to quiet the symptoms, if anything? It would do a world of good to know what condition I have and if it could be attributable to damage caused to my intestines by sprue. Wondering if others have had this same or similar experience during recovery?I realize that there is a lot of variability among patients based on sensitivity, damage done, etc., but are there any guidelines?

It would be interesting to know if others with severe symptoms and a positive diagnosis for sprue had immediate relief and no continuing symptoms...is this common?

Thanks!

Polomarco

[Janeti]

With myself the bloating lasted months. It wasn't with all foods. I think while your guts are healing, other food might bother you also. This might not be forever, but just for the time being. I also don't think that the blood work is very accurate. Maybe you might want to look into getting a DNA kit from enterolab. This way you will know if you carry the gene, and you will have a definate answer. Good luck, Janet

[Luisa2552]

I have been gluten-free almost 2 months and I feel like I'm a work on progress. I too often get bloaty but not nearly as bad as I did eating gluten. I feel 'full' a lot and even though my morning constitutional is normal , it just feels 'slow'. I blame it on my body getting used to the different diet. I have been trying to stay away from processed gluten-free foods and just sticking to meats, fruits and veggies and maybe a little rice. It's when I eat the processed stuff that I still feel full and bloated. Hope that helps

[EBsMom]

I realize that there is a lot of variability among patients based on sensitivity, damage done, etc., but are there any guidelines?

I've been gluten-free for about 3 months and I've been reading and trying to learn as much as I can about celiac disease, GS, the gluten-free diet, etc. Never, in all that time, have I seen anything approaching guidelines. Recovery is just too individualized. What popped into my head was that maybe you're experiencing a secondary food intolerance - dairy, most likely, though it could certainly be something else, too. It's very common to have either a lactose (milk sugar) inotolerance or a casein (milk protein) intolerance along with gluten intolerance. You might try cutting out dairy for a bit and see if it helps. Your GI symptoms all sounds like things that could be attributed to dairy.

Good luck!

Rho

[polomarco]

With myself the bloating lasted months. It wasn't with all foods. I think while your guts are healing, other food might bother you also. This might not be forever, but just for the time being. I also don't think that the blood work is very accurate. Maybe you might want to look into getting a DNA kit from enterolab. This way you will know if you carry the gene, and you will have a definate answer. Good luck, Janet

Thanks!

[polomarco]

I've been gluten-free for about 3 months and I've been reading and trying to learn as much as I can about celiac disease, GS, the gluten-free diet, etc. Never, in all that time, have I seen anything approaching guidelines. Recovery is just too individualized. What popped into my head was that maybe you're experiencing a secondary food intolerance - dairy, most likely, though it could certainly be something else, too. It's very common to have either a lactose (milk sugar) inotolerance or a casein (milk protein) intolerance along with gluten intolerance. You might try cutting out dairy for a bit and see if it helps. Your GI symptoms all sounds like things that could be attributed to dairy.

Good luck!

Rho

Thanks!

[polomarco]

I have been gluten-free almost 2 months and I feel like I'm a work on progress. I too often get bloaty but not nearly as bad as I did eating gluten. I feel 'full' a lot and even though my morning constitutional is normal , it just feels 'slow'. I blame it on my body getting used to the different diet. I have been trying to stay away from processed gluten-free foods and just sticking to meats, fruits and veggies and maybe a little rice. It's when I eat the processed stuff that I still feel full and bloated. Hope that helps

Thanks!

[mftnchn]

Yes, I still get it at 5 months out, but there is very slow progress. Might be my gene type associated with slower recovery.

Get a really good probiotic. Consider L-glutamine which helps heal the gut. This is helping me. Use activated charcoal which may help absorb the gas.

Is your elimination ok? Use vitamin C and magnesium, both of which help in many ways, but also can make your elimination better. Cut back and increase very slowly. Cut back if you have loose stool.