Treating Myself

[Courtney]

Okay, here's what I'm thinking as far as a treatment plan goes. Entocort didn't work for me at all, so it looks like I am going to be doing this through diet alone. I'm sure, in any case, that this is all food related for me because every time I eat I feel bad. Not just with the D, but with brain fog and extreme fatigue, too. Yesterday I was fine until I ate lunch, and then I collapsed on the couch. I know I'm still tired from not sleeping enough, but the reaction was so immediate that I have to think it was related. Here's what I'm going to try.

1. I've been GF since mid-August.
2. I've been DF since about 2 weeks ago when I figured out that I was definitely reacting to rice cheese, probably bc the first ingredient is casein.
3. I've been avoiding soy products for a long time bc it interacts with my thyroid medicine.
4.. I've been avoiding acidic foods like tomatoes and citrus. I think I saw that citric acid is an irritant for some people, so I'm reading labels for that.
5. I'm tired of being sick, and I don't need variety in my diet as much as I need to actually absorb some of my food, so I'm going to cut out corn, all trace amounts of soy, and eggs.
6. Then, I'm going to try adding corn and eggs back one at a time, hopefully after I go into some sort of remission.

Does this sound like a good plan? Is there anything else I should avoid? Or anything else I might try?

Thanks for your input.

Courtney

[katinchatt]

Morning Courtney!

Thanks for the kind words on the previous post. Wow ~ I think your progress and dedication to finding your triggers are pretty awesome. I can't or couldn't add to any of what you have planned, only that I sincerely hope it all works out for you.
I'm a stubborn one and can't even imagine what direction to go in, if Nexium wasn't my downfall. The thought of giving up so many comfort foods is almost as terrifying as remaining ill.

Good Luck in your Treatment!
kat

[barbaranoela]

sounds good Courtney--and the more U find your intolerances--things will get easier--
As I had posted many times Entocort wasnt a good thing for me---
Certain ingrediants did me in but it appears that my issues were caused by my retired GP--who had me on amoxicillan--for an ailment I didnt have----and then --as usual--when one is taking something they dont have--something U DONT want crops up--

Good luck to u and we will be looking for your progress too~~~

Have a great day--
Barbara

[tex]

Hi Courtney,

I agree with Kat and Barbara - that sounds to me like a good plan. You are right to forget about trying to eat a balanced diet, when most of your nutrients are passing through without providing much benefit, anyway. The goal is indeed to stop the D, (and the other symptoms, also, of course), and after your symptoms are under control, then you can fine-tune your diet, and add back in items that you may not actually be intolerant to, after your gut heals.

IMO, the main issue in the healing process, is gluten, and it is the only food intolerance, (again, IMO), that causes damage to the intestines that is significant enough to require more than a few days of healing. What this implies, is that until your intestines recover sufficiently from the gluten damage, you are going to continue to react, no matter how careful you are with your diet. If you have been suffering from symptoms for five years, (more or less, if my memory is correct), then it is possible that it may take a significant amount of time for healing to be completed, (though you may see some improvement, much sooner). Most of us, who went untreated for so long, took around six months to a year, to achieve remission, I believe, but I suspect that it won't take you as long to heal, due to your relatively young age. Anyway, the point that I was trying to make, is that any of the other food intolerances, (other than gluten), should not cause long-term effects, so it will be easier to "test" them, figure them out, once the damage from gluten has been repaired. Since you've been GF for a little over two months, you should start seeing some results, hopefully within a few weeks or so. I'll never forget the day I started the diet - August 28, 2002. According to my food diary, I felt worse after I started it, than I did before, but I stuck with it, anyway, and eventually, I started doing better.

I believe you've covered most of the bases on which foods to initially cut out. Be sure to minimize your fiber intake, as much as is reasonably possible, and whenever you eat any fruit or vegetables, be sure they are well cooked. Especially, never eat any raw lettuce, cilantro, etc., until after you gut has mostly healed.

Good luck, and please keep us updated on how things are going. When in doubt, please don't hesitate to ask questions.

Tex

P S Regarding your immediate reactions after eating - do you have any nausea, or just the symptoms that you mentioned?

[Courtney]

Thanks for the thoughts, everyone.

Barbara, I've never had issues with amoxicillin, but when I was little the pediatrician would try to prescribe it for my brother and me, but my mom always had to tell him no--because it just didn't work at all for either of us. No effect. Weird. Other drugs did...

Tex, I've had low-grade nausea pretty steadily as long as I've had MC symptoms, maybe actually a few years longer. As I've posted before, I had a negative laparoscopy for endometriosis in 2003, bc with the abdominal pain and nausea the doc was sure that was what I had. I think now that the pain must have been MC beginning to rear its ugly head, and the nausea is probably part of that, too. My D symptoms started in earnest late in 2003, after I had the laparoscopy. It's never been bad enough to cause me to vomit, which I'm glad of bc that plus D is not a fun combination. I should count my blessings, eh? As far as an immediate, noticeable effect from eating, though...just the things I've described, plus blurry vision.

Today I skipped breakfast and had some potatoes fried in a small amount of olive oil and a little bit of well-cooked (Isn't it lucky I like my vegetables well cooked?) broccoli for lunch. So far I feel fine. That was about an hour and a half ago. Fingers crossed.

Courtney

[tex]

Courtney,

I don't want to worry you unnecessarily, but blurry vision is a very uncommon symptom for MC. It's somewhat more prevalent with celiac disease, but still, not really common. Anyway, the point is, it seems to be connected with gluten sensitivity, but not very strongly. The reason why I mention this, is because blurry vision within about two hours after eating, is a common symptom of diabetes. Do your fasting blood test results look OK, IOW, is your fasting blood sugar level always in the 70-110 mg/dl range, or is it occasionally over 140 mg/dl?

There's one other possibility - Candida overgrowth can cause blurred vision, (and all the other symptoms you are having). In fact, the symptoms of candida overgrowth are very similar to the symptoms of gluten sensitivity, so it certainly could be contributing to the symptoms that you are having now, if you have candidiasis. If you crave sugar, that would be a very strong indication that you might have a candida problem. Candida has the ability to cause it's host to crave sugar, (especially, if the host tries to restrict his or her sugar intake), in order to insure that the yeast has plenty of sugar available to thrive on. As parasites go, I believe that's a unique characteristic, (the ability to modify a host's diet cravings).

If you're a diabetic, and I've just forgotten that you already mentioned it to us, I apologize. I have a problem keeping up with all that information, for everyone, since I don't have a copy of your records in front of me.

Tex

[Courtney]

That's okay, Tex. I'm not diabetic--actually, I have hypoglycemia. I just looked at my blood tests from this summer and my fasting blood glucose then was 65, and I don't crave sugar very often, probably because I don't consume very much refined sugar at all. I've been off the "kiddie cocaine" for about nine years, so I think I'm okay. I think the blurred vision could just be a side effect of the extreme fatigue bc it only happens when I'm pretty tired.

[tex]

Hmmmmm. Well, of course, hypoglycemia can cause blurred vision, but normally, that shouldn't happen until at least two hours after eating, unless you have insulin resistance. Has your level of triglycerides increased over time, along with a decrease in your level of HDL, (the good cholesterol)? It might not be a bad idea to have your insulin resistance and glucose tolerance tested. Personally, I wouldn't feel comfortable ignoring blurred vision, especially if it seems to be a recurring symptom.

Tex

[Courtney]

Hmm...I don't know, Tex. I just looked at my "Comp Metabolic Panel" from this summer. Cholesterol isn't included, and I don't think I've had that checked in a few years. I know it was very low when I had it checked last. Everything in me is just about guaranteed to be low. Don't know why that is, but it's been a lifelong thing. Even my body temp is low. I average around 96 degrees. 98.6 is a fever for me...when I was in elementary school, there was a rule in the nurse's office that they didn't call your parents unless you threw up or had a fever. I never got to go home bc I never had either, according to their standards.

Courtney

[tex]

Ah-ha! That's the reason - Hashimoto's hypothyroidism. I was overlooking that, (even though it's listed in your signature line - duh), until you mentioned the low body temp. It's very,very likely that your blurred vision is due to your hypothyroidism being under-treated. It's possible that the under-treatment is due to the malabsorption problem that accompanies celiac disease and MC, (until the damage to the gut heals), but I doubt that is the case, since unless I am mistaken, levothyroxine is not fat-soluble. (If it were, then it would be beneficial to take the T4 supplement with food, (which is not the case). In addition to soy, calcium and iron supplements are also known to suppress the absorption of levothyroxine, and to some extent, zinc and magnesium can similarly affect absorption.

Unless you're taking calcium and/or iron supplements within about four hours of the time when you take your thyroid hormone supplement, I would have to say that your thyroid hormone supplement dosage needs to be increased. If your treatment was adequate, you wouldn't have blurred vision, and your body temp wouldn't be chronically low. Inadequately treated hypothyroidism can also cause hypoglycemia. It's pretty clear that your doctor may be asleep at the wheel, regarding your hypothyroidism treatment, (many/most doctors are bad about under-treating hypothyroidism, presumably because over-treating it can lead to decreased bone mineral density), and that under-treatment is almost certainly contributing to your extreme fatigue, brain fog, and a lot of other things.

Tex

[Courtney]

Ah! Thanks, Tex. No, I'm not taking any iron or calcium supplements. I take it first thing in the morning and then don't eat for an hour after, which is what it says on my label. I'm on 112mg right now, and I had my levels checked in April. I will talk to my doc, though. My mom's always after me to stay on top of it, especially when I'm stressed out, like I am now! (She has it, too, and was very sick for about 10 years before her diagnosis.)

I know, it's crazy how stingy they can be with the dosage, isn't it? And I'm young and thin, probably mostly bc of the MC, so half the time I get a lecture about how it's not a weight loss drug, which I find a bit insulting and insensitive. I think they just can't possibly realize how terrible we feel without the proper dosage.

Thanks again,

Courtney

[thedell19]

Hi Courtney,

I agree with Kat and Barbara - that sounds to me like a good plan. You are right to forget about trying to eat a balanced diet, when most of your nutrients are passing through without providing much benefit, anyway. The goal is indeed to stop the D, (and the other symptoms, also, of course), and after your symptoms are under control, then you can fine-tune your diet, and add back in items that you may not actually be intolerant to, after your gut heals.

IMO, the main issue in the healing process, is gluten, and it is the only food intolerance, (again, IMO), that causes damage to the intestines that is significant enough to require more than a few days of healing. What this implies, is that until your intestines recover sufficiently from the gluten damage, you are going to continue to react, no matter how careful you are with your diet. If you have been suffering from symptoms for five years, (more or less, if my memory is correct), then it is possible that it may take a significant amount of time for healing to be completed, (though you may see some improvement, much sooner). Most of us, who went untreated for so long, took around six months to a year, to achieve remission, I believe, but I suspect that it won't take you as long to heal, due to your relatively young age. Anyway, the point that I was trying to make, is that any of the other food intolerances, (other than gluten), should not cause long-term effects, so it will be easier to "test" them, figure them out, once the damage from gluten has been repaired. Since you've been GF for a little over two months, you should start seeing some results, hopefully within a few weeks or so. I'll never forget the day I started the diet - August 28, 2002. According to my food diary, I felt worse after I started it, than I did before, but I stuck with it, anyway, and eventually, I started doing better.

I believe you've covered most of the bases on which foods to initially cut out. Be sure to minimize your fiber intake, as much as is reasonably possible, and whenever you eat any fruit or vegetables, be sure they are well cooked. Especially, never eat any raw lettuce, cilantro, etc., until after you gut has mostly healed.

Good luck, and please keep us updated on how things are going. When in doubt, please don't hesitate to ask questions.

Tex

P S Regarding your immediate reactions after eating - do you have any nausea, or just the symptoms that you mentioned?

I had problems on and off since I was a little kid and by the time I was 24 I was sick all the time. sometimes stress triggers a flare and I think that is what did it for me. Anyways I went gluten and dairy free for at least a year before I felt better- dont get me wrong- after 2 months or so I started to feel different but not "good." I could tell things were taking a turn for the better though.

I have now been GF and DF for just over 2 years now- and I guess it was 4 months ago when I could tell for sure I was getting better. I wake up most mornings with less of an upset stomach, I have less cramps and gurgling in the stomach after I eat, I can do physical things now and not get tired from it... the list goes on. HOWEVER, it did take almost 2 years for me to feel "good" again but I am still not 100%. I still have not overcome my depression and anxiety but I am working on it.

Just dont give up after a few months. I would try a good 6 months of gluten and dairy free. I ate mainly things that are easily absorbed and tollerated by most people- Lean meants (chicken, turkey, lean beef, fish etc), rice, potato, very well cooked green beans and every now and then a gluten and dairy free cookie (the GF cookies used to make me feel ill at first and like Tex said it is all part of the healing process).

Hope it all works out for you.