Really Worried

[emcmaster]

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Has anyone heard of it?

I was diagnosed with IBS in January 2004. I was put on Zelnorm for constipation and did okay for 6 months. Then my eating disorder (anorexia and bulimia) reappeared and I didn't eat much for another 4 months, during which time I had no bloating or constipation problems. I then started to recover a bit from that again and started eating normal foods (I was on a health kick - whole wheat, low-fat, high protein) and started having constipation problems as well as lots of bloating and abdominal pain. In January of 2005, I started on the IBS diet, which basically cut out caffeine, dairy, red meat, raw vegetables, artificial sweeteners and most fats (only fats which made up less than 20% of calories for any given meal were allowed). I felt a lot better and subsisted on mainly white bread and carbs for almost a year, but I still got horribly bloated somewhat regularly, just not as bad as before. Then in August I started on a clean eating plan where the only carbs I was eating were oats, sweet potatoes and brown rice. The bloating pretty much went away and I felt like a normal person for the first time in my life. I was convinced I was invincible and started eating whatever I wanted, at which point the bloating came back. I tried going back on the diet as before, but this time it didn't do anything. After dealing with horrible, 9-months pregnant looking bloating for 8 months, I decided to try going gluten-free. Almost immediately I noticed a huge, huge improvement. I've continued to notice a huge improvement, but in the last few days, I've felt pretty bloated. I think it might be cross-contamination from one of my pans, so I'm going to get new ones today.

Here's the problem: I'm really scared that I might have Leaky Gut Syndrome, which my naturopathic doctor mentioned as a possiblitity. He said that I could become intolerant to everything I'm eating because of it. It sounds like this could have been the reason I became intolerant to gluten - because I practically subsisted on it for a year. I'm eating very little variety of food right now: fruit, vegetables, safe protein shakes, egg whites and baked tostitos. I still can't handle dairy or fat. I don't mind eating like this for the rest of my life, but my wedding is coming up in 3 weeks and I cannot be bloated for that. And if I have to change my diet, what will there be left to eat?

Has anyone had any experiences with this?

Thanks for reading the ridiculously long post.

[Ursa Major]

Hi Elizabeth, and welcome to this board.

Leaky gut syndrome is one of the symptoms of celiac disease! So, if you actually have celiac disease (and it sounds like you do), you definitely have leaky gut as well. It should get better on the gluten-free diet, but could take about a year to clear up (possibly longer).

Being low fat is a terrible idea for starters. Just cut out the unhealthy fats, which are trans-fats and hydrogenated fats (saturated fats are needed for your body to function, and are NOT unhealthy, only in excess).

You may have cc happening, or you also may have other intolerances. My other intolerances didn't really show up until after I had been gluten free for a while. The reason is, that when your villi come back, your body will be able to absorb nutrients again, the ones that are good for you, but also the ones that you don't tolerate very well.

It could be dairy (which most people with celiac disease can't tolerate for a while, and many never), or the rice, or really anything at all.

I find that soy will cause almost the same symptoms as gluten for me (I am not the only one here who has that problem), and nightshades (potatoes, tomatoes, peppers, eggplant) cause bloating, gas and diarrhea as well (especially potatoes, tomatoes are more likely to cause migraines, and peppers horrible skin problems).

So, you may want to try eliminating all possible culprits and try them one at a time, to see which ones are a problem.

Also, have you looked through your personal care products for things that contain gluten? I have had to replace all my soaps and shampoo and conditioner, because they all contained wheat germ oil. It has made a huge difference. Lipstick can be a big problem, too, as well as lotions, make up etc.

[emcmaster]

Thank you very much, Ursula!

I know that I am intolerant to dairy - one little bit and I bloat up like a balloon. It's the same way with fat - if there is too much oil or fat in something I've eaten, regardless of what it was I ate, I bloat up like a balloon. I read that the reason this is is because my digestive system is so damaged that it has a hard time breaking down fat. Supposedly, I'll eventually be able to tolerate fat but not right now. Have you heard this?

I'm going to go through my personal care products to make sure nothing gluten-y is in there. And I will definitely look to other culprits.

Have you noticed the intolerances changing at all? With leaky gut syndrome it said that you can become intolerant to whatever you're eating at the time. My worry is that it will change - that I'm intolerant to gluten and dairy now but because I'm avoiding them, soon I'll become intolerant to whatever I'm eating at the moment. Is this correct?

Thanks again for all your help!!!

[Ursa Major]

Well, initially you may find you get more intolerances. But after about a year on the gluten-free diet, some of those should clear up. I have been gluten-free for only eight months myself, so I am still hoping for that. I am not too optimistic though, because I've had the symptoms caused by the other intolerances since I was a child. Plus, I found out about celiac disease when I was 52 years old, and the damage may be too great to ever completely heal.

With younger people like you, it is much more likely that there will be a full recovery. Your intolerances may not last forever (including the dairy one, but especially the fat one). I seem to be able to tolerate fat fine, but believe you when you say you can not.

Have you tried taking something like cod liver oil (the Carlsson brand is best, and doesn't taste gross)? That way you get the essential fatty acids, as well as vitamin D (celiac disease can result in a deficiency of vitamin D, as well as other deficiencies).

[emcmaster]

I used to take a supplement called Omega 3-6-9, which supplied me with all the essential fatty acids. I'm not sure why I stopped (ran out and forget to buy more, maybe?) but I'll get some more. I tolerated that just fine. And my naturopathic doctor thinks that it may be the saturated fats I don't tolerate well but that I might tolerate nuts fine. I'm too scared to try anything, as I'm getting married in 3 weeks, but I will definitely try them after the wedding, when I'm less scared of the bloating.

Thanks again - you've been lots of help!

[Guest cassidy]

I completely agree with Ursula, the leaky gut is likely caused by the Celiac and not the other way around. Congrats on getting married! I'm sure you are under a lot of stress, so stick with the diet and please realize that healing takes time.

My best bloating cures would be taking digestive enzymes with every meal and snack. Also, taking peppermint oil 30 mins to 1 hour before you eat. Those two work well for me. I only need the peppermint if I eat something that doesn't agree with me, mostly the digestive enzymes work well enough.

I would hope that if you quit gluten and your body starts to heal, that the leaky gut will get better and you won't devlop tolerances to your current foods. At least I hope that is how it works because I'm dealing with leaky gut and candida.

Good luck! Wedding dresses have so much fabric that no one will notice bloating. Also, if you have to you could get some sort of control top underwear to wear for the day.