Am I Just Healing, Or Are There More Intolerances?

[jabberwife]

So, I've seen this question asked many times on this forum, so I hesitate to ask again, but I'm just frustrated and not exactly sure what to do next. Sorry in advance for the long, drawn-out story...

After negative celiac blood tests, a diagnosis of IBS (these happened 4 years ago), a negative Enterolab test for both gluten and lactose/casein, I decided that in spite of all of this, my worsening symptoms drove me to go gluten-free for a while, and challenge, in order to determine whether gluten was the cause of my issues. (My symptoms were brain fog, fatigue, acid reflux, chronic constipation, gas, bloating, horrid flatulence, tingling hands and feet, slight edema in the tops of my feet) After going gluten-free (this started late June 2009) many of my symptoms went away. I was less fatigued, brain fog was gone, tingling hands and feet disappeared. The digestive issues lessened. In mid-August, I challenged (had about the equivalent of 2-3 slices of bread within a 18 hour time frame), and these symptoms came racing back, and the big D arrived, worse than I'd ever experienced - enough to confirm for me that I am indeed gluten intolerant. I have been gluten-free since.

However, my digestive issues have not cleared up entirely. I still deal with chronic constipation. I am very careful about my diet, I prepare almost all of my meals entirely from scratch and eat very clean - lots of veggies, fruits, meats, and rice. When I eat out, I call the restaurant ahead of time to determine what I can eat. I've been pretty experienced at how to eat gluten-free (my dad, sister, and brother are all celiac, and I cook for them frequently) so I'm confident in my diet.

I visited a new gastroenterologist in late July, explaining to him what has occurred and what my symptoms were. He suggested several routes, but to begin with magnesium supplements, and taking probiotics and digestive enzymes to assist in my ability to digest particularly "troublesome" foods, such as beans, broccoli, etc. I take 800 mg of magnesium citrate every morning, and have for about 2 months now. However, I continue to have constipation. I usually will "go" every day, but it's always just a little bit at a time, and hard and round, and never feel as though I'm "through". (sorry to be so graphic) Many times, I'll get so bad that I have to use an enema. If I take more magnesium, all that happens is that the stool gets softer, but I still only go a bit at a time, and then I have so much tummy rumbling and gas/flatulence, and feel like I have to go all the time. I've started to take aloe vera juice, but again, if I take too much, it causes the same symptoms as the magnesium, and less, it doesn't seem to make a difference - yet. I don't see any changes from the probiotics or the digestive enzymes. If I eat broccoli, beans, or other "gassy" foods, I'm bloated up so bad for the next day and so miserable from the gas that it's just not worth it - and this seems to be even worse than when I was still eating gluten. I eat enough fiber, but heavens, if I eat any more, my symptoms just get worse! I even exercise on a daily basis and have since going gluten-free (finally felt better enough to do so!), but that doesn't make a difference.

I am not sure what to do to deal with this. Are the symptoms I'm having just because I'm healing? Do I have "leaky gut" issues, and if so, what do I do with that? Should I consider other intolerances - namely, dairy? I don't have a direct response to dairy, never have...but until I eliminated gluten from my diet, I didn't notice a direct "cause and effect" correlation either, until the end, when my acid reflux got really bad and eating bread was beginning to make me nauseus. Should I go back to the GI doc and discuss that this isn't working? His next thoughts were to put me on a lower dose of Amitiza, then if that doesn't work, a sigmoidoscopy (sp?) and/or colonoscopy. The Amitiza won't work, likely...I've been on the higher dose before, and it caused diarrhea first, and then I went right back to being constipated after a few days. (the same thing that happens with EVERY medication or laxative I could possibly take)

I'm considering going casein-free for a few weeks, and then if that doesn't help, going back to the doctor. Does anyone have any other suggestions? Am I just being impatient, and this healing will take time? Thoughts?

Thanks so much for everyone's help!

[ang1e0251]

Dairy free is the next logical step. It's easy to do, easier than going back to your dr and trying more drugs, and you will have your answer in short order.

[jabberwife]

Thanks. I keep coming to that conclusion, I am just in denial. It's not that I'm a huge dairy eater, but I love cheese, and there is no good substitute for cheese. Sigh...

I think next week I'll start dairy-free, and go for a few weeks and see how I feel. Cross your fingers for me!

[mushroom]

Aaaahh, cheese, it is known as the great constipator. I definitely second the suggestion of trying the dairy elimination, but also bear in mind that it is early days yet. It takes more than three months to heal from this, and you do have to be patient.Also I found it was best at first to avoid the most difficult to digest foods; things like cabbage, broccoli, beans, corn on the cob, all just way too much work for a damaged intestine. Be very kind to it, don't eat too many raw things to start with like carrots, apple skins, stuff like that. When I eat salad it still passes straight through me; maybe it always will Good luck on getting back to "normal".

[jabberwife]

Yes, cheese...and sadly, it's going to be the part of dairy that I'll miss. Alas, I am dairy free starting today! Well, actually, last night. I am happy to report, however, that I prepared a wonderful chicken tikka masala using coconut milk in place of cream, and an Indian rice pudding for dessert with hemp milk and vegan butter for the ghee. Still quite lovely, and oh-so-comforting!

[ang1e0251]

Good going! You can do it. I would be sad about the cheese too. I may have to give it up at some point too. If I have too, I will. It's always worth it if we can feel normal again. I gave up most of the grains. I would read about people who did that and think, "I don't think I could do that." And yet I have and now I don't miss it. Even my husband saw a commercial for pizza the other day and mentioned he used to crave that stuff but it doesn't even appeal to him now.

[katie may]

Hello there,

I too suffer am Celiac and am a self diagnosed leaky gut sufferer. Dairy is the #1 place to start but if that doesnt work, check out the SCD or a rotation diet. I reccomend checking out the Breaking the Vicious Cycle website if it comes to this, whether or not you choose to do the diet. At least the home-made yogurt would probably still be good for you and isn't so hard to make. Elaine Gottschall researched digestive issues for years before she passed away and the diet's really helped a lot of people, including myself, although I have to admit my C is not completely gone (I still haven't started the constipation protocol on the PecanBread website either, though). I wish you the best!

[T.H.]

I am pretty new to the whole celiac problem, and to food allergy/intolerances at all, but I'll share what I've been through, just because I think it might help.

I had to cut out everything. I went gluten free, and about died, literally, as I started having reactions to foods so bad that I ended up in the hospital. When I started feeling bad, I did was you are - cut certain things, but not all the problems went away. And then I had to cut everything but boiled chicken, quinoa, and a couple veggies that I knew weren't bothering me. Thing was, when I did? I felt better. There were things that hurt/felt bad that I hadn't even realized were hurting until suddenly they STOPPED hurting.

And now...slowly adding stuff back in. Without the extra ingredients, it's really EASY to tell when something is on the 'bad' list. I think, in a way, that's easier. It SUCKS to cut everything out. So much I cry over it sometimes, honestly. BUt at the same time, it is SOOOO easy to tell what food is bothering you when you are only adding in one food at a time. Which means I'm in less pain and everything as well!

On top of this, though - if your doc hasn't done this yet, shame on him, by the way - you need some tests for vitamin deficiencies. Go do some research, find out what vitamins you can be deficient in with absorption problems, and make them give you these, because you could very easily be suffering from those as well, and they will only exacerbate the problem. In fact, you probably ARE suffering from them

My gastro? When I was diagnosed, the first thing he did was order a full blood work up on a horde of vitamins, and a horde of food allergies and intolerences. I'm getting the results next monday. But here's one thing he's already got back: 6 weeks off of gluten, and I'm not having a gut that is better in the slightest. And in his opinion, it's because I'm still reacting to other foods, so nothing heals when your body is still 'freaking out.' I wouldn't be surprised if you have the same issues with 'leaky gut,' possibly.

Anyway...good luck to you! You're definitely at a place where everyone truly 'feels your pain!'

[ironspider33]

  T.H. said:

I am pretty new to the whole celiac problem, and to food allergy/intolerances at all, but I'll share what I've been through, just because I think it might help.

I had to cut out everything. I went gluten free, and about died, literally, as I started having reactions to foods so bad that I ended up in the hospital. When I started feeling bad, I did was you are - cut certain things, but not all the problems went away. And then I had to cut everything but boiled chicken, quinoa, and a couple veggies that I knew weren't bothering me. Thing was, when I did? I felt better. There were things that hurt/felt bad that I hadn't even realized were hurting until suddenly they STOPPED hurting.

And now...slowly adding stuff back in. Without the extra ingredients, it's really EASY to tell when something is on the 'bad' list. I think, in a way, that's easier. It SUCKS to cut everything out. So much I cry over it sometimes, honestly. BUt at the same time, it is SOOOO easy to tell what food is bothering you when you are only adding in one food at a time. Which means I'm in less pain and everything as well!

On top of this, though - if your doc hasn't done this yet, shame on him, by the way - you need some tests for vitamin deficiencies. Go do some research, find out what vitamins you can be deficient in with absorption problems, and make them give you these, because you could very easily be suffering from those as well, and they will only exacerbate the problem. In fact, you probably ARE suffering from them

My gastro? When I was diagnosed, the first thing he did was order a full blood work up on a horde of vitamins, and a horde of food allergies and intolerences. I'm getting the results next monday. But here's one thing he's already got back: 6 weeks off of gluten, and I'm not having a gut that is better in the slightest. And in his opinion, it's because I'm still reacting to other foods, so nothing heals when your body is still 'freaking out.' I wouldn't be surprised if you have the same issues with 'leaky gut,' possibly.

Anyway...good luck to you! You're definitely at a place where everyone truly 'feels your pain!'

TRy GOAT CHEESE

I just made some rice pasta with ground turkey in it, veggies, and then baked it with goat cheese on top!

I also switched to goat's milk with no problems....