Another day, another doctor
I've been thinking a lot about Baby E's food reactions this week. Since they don't seem to be IgE-regulated, that could be a very good thing. It opens up some possibilities that would be treatable, and that she would be much more likely to grow out of.
For instance, it's likely that the issue could be one with damage to her gut--perhaps something like an eosiniphilic disorder, where certain foods cause abnormal cells to grow in the esophagus, gastrointestinal tract, or elsewhere in the digestive system.
I'm not sure what the other possibilities are, but I know there are other things that can cause permeable or "leaky" gut--celiac disease is one we've already looked at. These things can be caused by adverse food reactions, but the gut permeability can also cause more adverse food reactions. We know she has higher than normal levels of candida and bacteria, which could also point to some underlying issue that's somehow weakening her digestive system.
The exciting thing is that if Baby E's reactions to some or all of the foods are caused by an issue with her digestive system, they may go away once the underlying issue is solved and her gut heals.
Someone from the GI specialist's office did finally get back to us yesterday. Our GI specialist, apparently, "has been very busy" for the last several weeks, which is why my phone calls were not returned until now.
An order for the "reducing substances" test was FAXed to the hospital lab, and I dropped off a lovely stool sample yesterday. So there's actually a chance the test results will get back before our GI appointment next week.
I saw my own doctor yesterday, too.
#############
I weighed in at a whopping 100 lbs fully-dressed. The appointment consisted mostly in a student taking a history and asking my symptoms (fatigue, dizzy spells, weight loss, low temperature, irregular cycles, digestive & swallowing issues, basically not feeling good, etc. etc.), asking me if I'd had my thyroid checked (I have), and asking why I'm there and what I think I want the doctor to do about my symptoms, since it's really nothing particularly new, only worse.
Then the doctor came in and asked me if I am anorexic or bulemic (again), to which I answered (again) that I am not, no I don't have body image issues (except that I know I'm underweight and would like to gain about 15 pounds), no I'm not purging, and yes I'm eating plenty of healthy food in normal-to-large quantities, but everything high-calorie is pretty much out because of Baby E's allergies (er, excuse me, adverse food reactions).
Basically, the verdict was "It's probably just your autoimmune stuff acting up and because of being underweight, and there's most likely nothing we can do about it. You just need to take care of yourself, eat right, get plenty of exercise, etc. etc."
They did send me for a few more tests and, depending on the results of those, my doctor said he may refer me to a rheumatologist to look further into the autoimmune angle. They drew blood to do a few more panels and are going to send me for a barium swallow.
Meanwhile, I'm supposed to be keeping track of everything I eat so the doctor can see exactly how many calories I'm taking in.
For instance, it's likely that the issue could be one with damage to her gut--perhaps something like an eosiniphilic disorder, where certain foods cause abnormal cells to grow in the esophagus, gastrointestinal tract, or elsewhere in the digestive system.
I'm not sure what the other possibilities are, but I know there are other things that can cause permeable or "leaky" gut--celiac disease is one we've already looked at. These things can be caused by adverse food reactions, but the gut permeability can also cause more adverse food reactions. We know she has higher than normal levels of candida and bacteria, which could also point to some underlying issue that's somehow weakening her digestive system.
The exciting thing is that if Baby E's reactions to some or all of the foods are caused by an issue with her digestive system, they may go away once the underlying issue is solved and her gut heals.
Someone from the GI specialist's office did finally get back to us yesterday. Our GI specialist, apparently, "has been very busy" for the last several weeks, which is why my phone calls were not returned until now.
An order for the "reducing substances" test was FAXed to the hospital lab, and I dropped off a lovely stool sample yesterday. So there's actually a chance the test results will get back before our GI appointment next week.
I saw my own doctor yesterday, too.
#############
I weighed in at a whopping 100 lbs fully-dressed. The appointment consisted mostly in a student taking a history and asking my symptoms (fatigue, dizzy spells, weight loss, low temperature, irregular cycles, digestive & swallowing issues, basically not feeling good, etc. etc.), asking me if I'd had my thyroid checked (I have), and asking why I'm there and what I think I want the doctor to do about my symptoms, since it's really nothing particularly new, only worse.
Then the doctor came in and asked me if I am anorexic or bulemic (again), to which I answered (again) that I am not, no I don't have body image issues (except that I know I'm underweight and would like to gain about 15 pounds), no I'm not purging, and yes I'm eating plenty of healthy food in normal-to-large quantities, but everything high-calorie is pretty much out because of Baby E's allergies (er, excuse me, adverse food reactions).
Basically, the verdict was "It's probably just your autoimmune stuff acting up and because of being underweight, and there's most likely nothing we can do about it. You just need to take care of yourself, eat right, get plenty of exercise, etc. etc."
They did send me for a few more tests and, depending on the results of those, my doctor said he may refer me to a rheumatologist to look further into the autoimmune angle. They drew blood to do a few more panels and are going to send me for a barium swallow.
Meanwhile, I'm supposed to be keeping track of everything I eat so the doctor can see exactly how many calories I'm taking in.
Labels: allergies, health issues
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Posted by purple_kangaroo at 10:28 AM[Permanent link]
7 Comments:
These things sound hopeful. I sincerely hope that you'll be able to put on weight soon. Underweight is exhausting.
High Candida counts will certainly contribute to leaky gut in a major way. I know aren't really on board with the whole Candida thing, but it's something to consider. Small amounts of Candida are normal. Once dysbiosis occurs leaky gut is usually not far behind, nor are mysterious food allergies that seem to come out of nowhere. The Diagnosis Techs test can check for Baby E's Candida strain as well as any bacterial overgrowths. Hope you have some luck.
Thanks, Liz.
Newwwg, we're discussing that with the naturopath. She said there's a stool test they can do where they culture the yeast and/or bacterial strains and then see what works to kill it. Then we'd do some allergy testing to see which thing(s) that were effective she could tolerate.
Since Baby E reacted to the Nystatin (and Nystatin is grown on corn), it could be a challenge figuring out what she can tolerate that will be effective.
I'm still holding out hope at this point that we'll find some underlying issue that will be relatively easy to treat, and that her gut will heal and some of the imbalances be easier to resolve one it's treated. I can hope, can't I? :)
PK,
Hope your naturopath has some solutions. If not, I'm sure there is someone out there who does.
I thought you were able to find some compounded Nystatin with no corn traces? Or maybe I had that wrong. There are also other specially compounded drugs available to treat Candida but I think it is more helpful if you would know which strain exactly Baby E has.
Also, and I'm sure your doc will tell you this, healing a damaged gut takes a little time so you might not see immediate results.
Finally, the secondary bacterial infections that often come with Candida are usually hard to diagnose without proper stool testing.
Not sure which test your doc uses but I'd ask how the test works exactly. Many work on a "what you see" in the sample basis which is not always good since many parasites, etc. grow in cycles or live deep in the body and don't make it out in every BM. My doctor explained that it is more accurate to use a test that checks for antibodies. This made sense to me and we were able to uncover four secondary infections in addition to the Candida. These were causing the majority of my symptoms, not the Candida.
Healing the gut is not hard. And yes, there certainly is always hope.
Good luck to you.
newwg, even after a couple of months on the Nystatin she was still getting reactions to it, and they started getting worse--hives, face rash, GI symptoms, etc. I wasn't expecting immediate results but I thought a month or two should be enough to tell whether it was helping or not in combination with the yeast-free diet. She did much better after we took her off the nystatin.
The test we did was the metametrix urine test, which looked at a number of various elements including bacteria, yeast, parasites, etc. I think it was looking for antibodies but I'm not sure.
Kanga,
From what I've read about yeast infections they can take up to a year to clear out of a system - depending upon how extensive they are. Also, some are resistant to certain anti-fungal medications and no matter how much you take, there is going to be no cure for it without the elimination diet.
Candida elimination diet is also hard to take. It is a "cleansing" diet. In other words, you often feel much worse because the Candida is dying off and causing flu-like and histamine reactions. This can include symptoms that are very similar to allergy.
Basically, in order to get rid of Candida you eat protein and green vegetables. That's it. Little to no grains, fruits, or high-sugar vegetables (including most beans/legumes). The candida feeds off those three things but will not survive if you eat green vegetables and meats.
Good Luck,
MLO
PK,
From what I've heard the urine test is not always accurate. Maybe in Baby E's case the Diagnos Tech comprehensive stool panel would be worth investigating.
I found that it took a good 6 months to see that my gut was beginning to heal. There are other options besides Nystatin that may work for Baby E (I didn't use Nystatin, myself). I'm sure your Naturopath can help you out in that department or you can feel free to email me for more information.
Best of luck
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