Recovery Phase - Quite Confused

Kalgar · February 13, 2011

Hey all.

I'm a fairly newly diagnosed Coeliac, diagnosed literally 4 days before Christmas last year. Been gluten free ever since!

However, there are some complications, which is why I came here, to hopefully get some answers from the people who'd know best, short of seeing the doctor again - you guys!

For starters, I had gone to the doctor's initially because I was experiencing diarrhoea way too often for my liking. Literally 3 or 4 days a week I would suffer like this. Not a particularly fun time! The doctor sent me off for a blood test, which came back with a "potentially Coeliac" result. He referred me to a gastroenterologist for more tests and such.

The gastroenterologist agreed with the likelihood of Coeliac, and recommended that I have a gastroscopy. I took the test, and at first glance he said I was clear. When the actual biopsy results came in a couple of weeks later, however, they were consistent with Coeliac. With that, I was referred to a dietician, told to get off the gluten, and to have another blood test and see him again in three months time.

Since going off the gluten, I hardly feel different at all! Admittedly, the diarrhoea has been much reduced - to more like once a week rather than putting me out of commission more often than not. I find myself more tired than anything nowadays (though that is likely due to work pressures combined with going to bed late due to my gaming habits ). However, if it was the Coeliac that was causing the frequent diarrhoea, shouldn't I have stopped with that altogether? I also find that in general I'm still not "going" properly, in that my stools are quite loose even at the best of times.

Not a particularly fun topic... I apologise.

Anyway, is this kind of thing normal, considering I'm at about a month and a half of gluten freedom? Should I be worried? Should I be marching right back into that doctor's office and demanding answers? Or should I just stop eating altogether?

Thanks in advance for your help. I'm at an utter loss!

mushroom · February 13, 2011

Well Andrew, stopping eating gluten is not like turning off the light switch. It has taken you a while to get to where you were at diagnosis, and it is going to take a while to heal again. Gluten damages your small intestine, and that is what the biopsy results revealed, so that damage has to heal. How long will it take?? Everyone is different so it's hard to say. Depends on how much damage, how strict you are with the diet, how much cc (cross-contamination) you get, lots of variables.

For the fatigue, you can consider that you are probably going through withdrawal because gluten acts like an opioid to the body and most people experience some kind of withdrawal symptoms. These generally only last a few weeks. Lactose is another thing that can interfere with your feeling better. The enzyme lactase which digests that milk sugar is produced in the part of the small intestine that is damaged by the gluten, so until it heals you will have trouble digesting milk, cream, ice cream, and maybe other dairy as well and this will give you diarrhea. You will have to try trial and error for things like butter, hard cheeses and yogurt which are the dairy you will most likely be able to tolerate. Once your villi have healed in a few months you should be able to eat them all again There are other milks out there like almond, hemp, rice, soy if you must (personal opinoin here)

Rest assured that what you are going through is quite normal and it takes a while for that big leap of improvement. Depending on how much damage you have done it may take up to a year to properly heal, for some of us it takes even longer. You may find other food intolerances (or you may not ), you may find you need to take probiotics and digestive enzymes, or you may not. Did your doctor test you for any nutritional deficiencies, because these are common in celiacs because of our inability to properly absorb our food. If not you can ask your GP to do this for you, things like Vt. D, B12, iron, magnesium, calcium.

No, at this point you should not be worried, you should not stop eating, you do not need to march back to your doctor's office. You just need to keep doing what you are doing and stay patient.

ravenwoodglass · February 13, 2011

What are you eating? If you can go with mostly unprocessed whole foods that can help you heal fastest. Make sure that you have your own dedicated toaster and scratched pots and pans, strainers for pasta and any cutting boards that have been used for gluten foods. It can take some time to heal and some of us find a food and symptom diary to be helpful in pinpointing if certain other foods are a problems. Do drop dairy as was suggested at least for a little while and while you are still healing avoid alcohol if you don't already.

cahill · February 13, 2011

Welcome to the forum a great group of people here and a vast amount of knowledge and support.

Are you sure your not getting gluten in your food from somewhere?? cross contamination or maybe hidden in your foods?? After going gluten free it took me awhile to find all the hidden gluten in my foods.

IrishHeart · February 13, 2011

I commiserate (6 weeks for me) and I agree with the wise answers provided here. It is an up and down healing process and the best advice is...stay the course.

I am assured by so many others who have "BEEN THERE, DONE THAT" that things will get better and better as long as you stay completely gluten-free and patient. That's what I hang on to.

Hang in there! It does get better...and that diarrhea will subside. I had it nearly every day for 3 years and now, I do not! I use digestive enzymes and probiotics and they helped me a lot.

Everyone is different, but we have one thing in common---we need to heal the damage done-- and unfortunately, that takes time. But, you are on the way!

I hope you feel better soon!

yorkieluv · February 13, 2011

Hi, I was just diagnosed before Thanksgiving. My doctor recommended probiotics and digestive enzymes as part of the process. I know alot of people tend to have secondary problems such as a problem with dairy, which is what I have. Hang in there and I hope you get to feeling better soon!

Kalgar · February 13, 2011

Thanks guys, I feel a lot more at ease knowing that it's normal.

@mushroom: I didn't realise that about dairy! That would be quite a large tripping point for me. While I've been utterly religious about checking the ingredients on everything (including items marked as Gluten Free on the packet - since that way I can learn about things that are ok that I may not otherwise have picked up on), I still have been having ice cream and milk and such!

As for potential deficiencies and so on, I have another blood test and doctor visit coming up in a month, and I'm reasonably sure (if my memory serves me correctly) that this test is encompassing those as well as the Coeliac progress.

@raven and chill: I'm being very careful about what I eat. Of course, its still possible to cop cross contamination (I live in a mixed household - I still live with my parents, and I'm the only Coeliac, which makes things difficult for all involved) although I've been making a concerted effort to minimise it.

@Irish and Yorkie: Thanks

IrishHeart · February 14, 2011

On 2/13/2011 at 10:08 PM, Kalgar said:

Thanks guys, I feel a lot more at ease knowing that it's normal.

@mushroom: I didn't realise that about dairy! That would be quite a large tripping point for me. While I've been utterly religious about checking the ingredients on everything (including items marked as Gluten Free on the packet - since that way I can learn about things that are ok that I may not otherwise have picked up on), I still have been having ice cream and milk and such!

As for potential deficiencies and so on, I have another blood test and doctor visit coming up in a month, and I'm reasonably sure (if my memory serves me correctly) that this test is encompassing those as well as the Coeliac progress.

@raven and chill: I'm being very careful about what I eat. Of course, its still possible to cop cross contamination (I live in a mixed household - I still live with my parents, and I'm the only Coeliac, which makes things difficult for all involved) although I've been making a concerted effort to minimise it.

@Irish and Yorkie: Thanks

I'm betting the dairy is what's giving you the grief. I gave it up to speed healing and to see if it would stop the "D" and it did. (I do use ghee with no problem)Hopefully, I'll be able to add it back in later--I miss cheese, yogurt and ice cream . Good luck, kiddo!! Hang in there.

Marlie · February 14, 2011

Living in a mixed household is hard. Especially beware of the condiments like butter and the kitchen counters. It's hard to break other peoples habits and they just don't get it even if they are your parents (I hate to say this but it can be all to true). We just found the lip moisturizer to have wheat after almost 3 months. We thought we had everything but we didn't.

bincongo · February 14, 2011

If your parents use flour to cook with it gets in the air and settles on lots of things. Also there is Lactose free milk, hard cheese is ok to eat and yogurt is ok in certain brands. Breyers makes a lactose free ice cream in vanilla only. I don't look for lactose in every product but I do cut out the larger amounts like milk and I use lactose free milk for cooking.

I had good weeks and bad weeks after going gluten free and sometimes felt worse than before. It wasn't until I was gluten-free for about 3 months that I spent more time feeling good than I did feeling bad but I still had ups and downs.

Kalgar · February 16, 2011

I'm finding it very tough, to be honest. The last few days I have been quite ill on and off - even though I ate nothing that contained gluten. There may have been traces of lactose, but I'm finding it very strange >_<

ravenwoodglass · February 16, 2011

On 2/16/2011 at 2:27 AM, Kalgar said:
I'm finding it very tough, to be honest. The last few days I have been quite ill on and off - even though I ate nothing that contained gluten. There may have been traces of lactose, but I'm finding it very strange >_<

Are you eating mostly whole unprocessed foods? Gluten can be sneaky and some items are gluten free by ingredients but can be heavily cross contaminated. The best example I can think of is Frito Lay products. They have finally given a good bit of info on their website but still don't list CC risks on the bags. It does take time to heal and you do need stuff like your own toaster, cutting boards, colander etc. If you tell us what your diet is like we might be able to help. Also another common intolerance amoung us is soy, do you eat a lot of gluten free products that also contain soy?

Kalgar · February 16, 2011

On 2/16/2011 at 2:00 PM, ravenwoodglass said:

Are you eating mostly whole unprocessed foods? Gluten can be sneaky and some items are gluten free by ingredients but can be heavily cross contaminated. The best example I can think of is Frito Lay products. They have finally given a good bit of info on their website but still don't list CC risks on the bags. It does take time to heal and you do need stuff like your own toaster, cutting boards, colander etc. If you tell us what your diet is like we might be able to help. Also another common intolerance amoung us is soy, do you eat a lot of gluten free products that also contain soy?

I am eating *some* processed things, all are ones that are marked as Gluten Free. Luckily enough, being in Australia if it says Gluten Free on the pack it sure as hell is! (<5 ppm IIRC)

I am suspecting that it is things like the cutting board etc. I took another look at the Coeliac for Beginners article on the main site, and am going to show that to the family to try and wrap their heads around the idea

I am putting every effort into removing gluten from my diet. Most times I am taking gluten free salami and ham with me to work, and rice cakes in lieu of gluten free bread (because it tastes SO bad >.<). Dinners are usually rissoles (homemade without breadcrumbs or anything like that), or gluten free sausages, rice, steaks, vegies etc.

For the next week and a half I will be living with my girlfriend though (her mother's on holidays and she hates being alone) which means I will be cooking for both of us (she's not particularly well versed in cooking) - most of the time when I'm over there I find I have few problems, though I still end up sick once a week usually (normal recovery?)

I noticed that at my home the kitchen has lots of plastics and things, and everything is manually washed. At her place, most of the serving dishes and such are ceramic or glass, and a dishwashing machine is used. According to the article, this matters?

(https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/ the article I am referring to)