First Glutening Since Diagnosis - Worse Than I Expected!

[Medz]

Have been gluten-free for a little less than a month, and got glutened by a salad with croutons that I didn't spot until too late on Tuesday and some crumbs were ingested. I'm really surprised at my reaction, as I didn't have especially severe symptoms before diagnosis. I got pains in my gut within hours, and then cramps, and now three days later I'm getting the Big D after every meal, especially, I fear, those containing dairy (cereal with milk went through me in 30 mins this morning).

Can I expect reactions to get worse the longer I'm gluten-free? Is lactose-intolerance inevitable? I think I've got my head around gluten-free, but if I can't have cheese I might have to cry.

[Gfresh404]

  Medz said:

Have been gluten-free for a little less than a month, and got glutened by a salad with croutons that I didn't spot until too late on Tuesday and some crumbs were ingested. I'm really surprised at my reaction, as I didn't have especially severe symptoms before diagnosis. I got pains in my gut within hours, and then cramps, and now three days later I'm getting the Big D after every meal, especially, I fear, those containing dairy (cereal with milk went through me in 30 mins this morning).

Can I expect reactions to get worse the longer I'm gluten-free? Is lactose-intolerance inevitable? I think I've got my head around gluten-free, but if I can't have cheese I might have to cry.

It is not uncommon for people to appear more sensitive to gluten after going gluten-free. In some sense your body got used to constantly being poisoned and built up defenses. But now that you removed the poison, the body isn't used to it anymore so when it does get it again, it overreacts. Reactions for me seemed to be the same for about the first 6 months of being gluten-free. And then the next two months, the reactions seem to become somewhat more mild. I would still get really tired and maybe have a BM (sry if tmi). So I think in the long run, reactions will become less and less severe but still very noticeable and annoying.

Lactose-intolerance is not inevitable. It really depends on the health on your small intestine. For most people lactose-intolerance is only temporary. But it is a good idea to cut out all-dairy, I would say for at least the first six months. It is not always the lactose that causes issues, for many people casein (a protein found in milk) is also a problem. Dairy in general is pretty troubling to our digestive systems. Many people are lactose intolerance anyway but not because of a disease, just because that is what happens when you get older. We weren't really meant to be consuming another animals milk. Think about it, we don't drink breast milk anymore do we? So why would we drink cow's?

I used to be like you, thinking I couldn't live without dairy. But I have found Almond Breeze by Blue Diamond to be a great alternative. You really do get used to it and eventually you stop eating what you want and eat what will make you feel the best. And it turns out for me, that just means tons of fruits, vegetables, and lean meats. Perhaps you will discover the same thing.

But if you really desperately need dairy, you could try getting a lactaid pill. This will only digest the lactose and not the casein. So you may still have issues with it. But I'd still recommend staying off of it for at least 6 months and then try it again at a later time. But good luck and feel free to PM me is you have any further questions.

[Gemini]

  Gfresh404 said:

It is not uncommon for people to appear more sensitive to gluten after going gluten-free. In some sense your body got used to constantly being poisoned and built up defenses. But now that you removed the poison, the body isn't used to it anymore so when it does get it again, it overreacts. Reactions for me seemed to be the same for about the first 6 months of being gluten-free. And then the next two months, the reactions seem to become somewhat more mild. I would still get really tired and maybe have a BM (sry if tmi). So I think in the long run, reactions will become less and less severe but still very noticeable and annoying.

Lactose-intolerance is not inevitable. It really depends on the health on your small intestine. For most people lactose-intolerance is only temporary. But it is a good idea to cut out all-dairy, I would say for at least the first six months. It is not always the lactose that causes issues, for many people casein (a protein found in milk) is also a problem. Dairy in general is pretty troubling to our digestive systems. Many people are lactose intolerance anyway but not because of a disease, just because that is what happens when you get older. We weren't really meant to be consuming another animals milk. Think about it, we don't drink breast milk anymore do we? So why would we drink cow's?

I used to be like you, thinking I couldn't live without dairy. But I have found Almond Breeze by Blue Diamond to be a great alternative. You really do get used to it and eventually you stop eating what you want and eat what will make you feel the best. And it turns out for me, that just means tons of fruits, vegetables, and lean meats. Perhaps you will discover the same thing.

But if you really desperately need dairy, you could try getting a lactaid pill. This will only digest the lactose and not the casein. So you may still have issues with it. But I'd still recommend staying off of it for at least 6 months and then try it again at a later time. But good luck and feel free to PM me is you have any further questions.

This was a really well thought out post and I couldn't agree with you more! I believe that a person does not become more sensitive to gluten and reactions do not get worse. It only appears that way because you've probably felt so good after maintaining a gluten-free diet. I know when I was at end stage, my reactions were no worse than they might be now, if I did ingest gluten. The only thing that seems to make things worse is if you receive a sustained exposure to gluten. Then you will impair your small intestine longer and that might make a person sicker. Once you clean out your system and things start to repair, any gluten hit will really be noticed because you aren't in that pre-diagnosis state of really bad health.

As far as dairy is concerned, I also agree that people could do well with very little to no dairy. Americans consume way too much. Maybe that's why I have been feeling so good and haven't had the issues many Celiacs seem to suffer from. Supposedly, gluten, dairy and sugar are the worst contributors to bad health.

If most people cut the dairy and sugar down to just an occasional indulgence, they would feel a lot better and many health problems would go away.

[Medz]

Thanks both for what seem to be very sensible explanations.

The really gutting thing (pardon the pun) is that although I've tested positive for coeliacs with a blood test, I still need to have a biopsy to confirm, but can't get an appt until late October (long story). I didn't want to stay on gluten for another 3 months as I wanted rid of the symptoms, so my doc and I agreed go gluten-free and then reintroduce it for a few weeks ahead of the test, given that I didn't think my symptoms were that bad. But since being gluten-free I feel so much better and realize just how much discomfort I was putting up with, and think that a reintroduction is going to knock me for six. But if I don't, biopsy may give a false negative. Sigh. Catch 22.

[ang1e0251]

Would your doctor dx you based on your blood work and dietary response? Then you wouldn't have to go through a biopsy.

[JNBunnie1]

  Medz said:

Thanks both for what seem to be very sensible explanations.

The really gutting thing (pardon the pun) is that although I've tested positive for coeliacs with a blood test, I still need to have a biopsy to confirm, but can't get an appt until late October (long story). I didn't want to stay on gluten for another 3 months as I wanted rid of the symptoms, so my doc and I agreed go gluten-free and then reintroduce it for a few weeks ahead of the test, given that I didn't think my symptoms were that bad. But since being gluten-free I feel so much better and realize just how much discomfort I was putting up with, and think that a reintroduction is going to knock me for six. But if I don't, biopsy may give a false negative. Sigh. Catch 22.

You actually have to be eating gluten for a lot longer than a few weeks for a biopsy to be worth anything. It seems pretty clear, what with the blood test and your recent reaction. Exactly what will it serve to have this biopsy done? Can't your doctor diagnose you based on the blood test?

Also, my reactions to gluten changed after being gluten free for some time. The first time I got glutened after being gluten free for months, I became lactose intolerant for a week- 2 weeks and never had been before. I also developed dermatitits herpetiformis for the first time, so it really can change after you've gone gluten free. I'd say give your system a week or so off dairy, and then have something while you're at home and can handle what might happen.

[Gfresh404]

  Medz said:

Thanks both for what seem to be very sensible explanations.

The really gutting thing (pardon the pun) is that although I've tested positive for coeliacs with a blood test, I still need to have a biopsy to confirm, but can't get an appt until late October (long story). I didn't want to stay on gluten for another 3 months as I wanted rid of the symptoms, so my doc and I agreed go gluten-free and then reintroduce it for a few weeks ahead of the test, given that I didn't think my symptoms were that bad. But since being gluten-free I feel so much better and realize just how much discomfort I was putting up with, and think that a reintroduction is going to knock me for six. But if I don't, biopsy may give a false negative. Sigh. Catch 22.

I can totally understand you wanting to get an "official diagnosis" just for your own sake. I myself tested negative for all celiac tests including a biopsy. It took me a long time to accept the fact that just because modern medicine cannot officially recognize my disorder, that does not mean it is not real.

But I believe gluten intolerance is actually now an officially recognized disorder. It is a diagnosis of exclusion, meaning you have to test negative for everything else first, including Celiac. So I guess the question becomes: Can you live with the fact knowing that you either have Celiac Disease or Gluten Intolerance? Which actually most people recognize as the exact same thing. The only difference is that instead of gluten attacking your small intestine as in Celiac Disease, it goes after other organs and/or organ systems such as the nervous system.

Another plus is that if you are officially diagnosed with a disease, your insurance rates will (most likely) go up.

Plus you could always get testing done through Enterloab. They are a separate independent lab that can look to see if your body's immune system is reacting to gluten (and also other major allergens). Each test is about $100 I believe and the test may actually be covered by insurance.

IMO, it is better to remain gluten-free for the rest of your life. You don't want to be in hell for the next 3 months just to get confirmation of something you already know.

[EazyE]

Hi, I started like that too, but now 8 months since diagnosis, my reactions aren't bad at all. I hope the same goes for you. Mine let up after the first four months or so. Good luck. It really does get easier.