Not much to report. The PCOS diagnosis sent us off on a tangent. I think we finally found an endocrinologist we like (this would be #4). Continuing to adjust thyroid medicine and taper down the prednisone, things seem to be pretty stable in general so once we achieve a couple of goals with those meds, we'll reevaluate where we're at. Getting enough thyroid hormone definitely helps with the gut.
Now on the Lialda I think we're starting to see very slow progress. As we didn't see any benefit from budesinide, we're starting to taper off that to see what happens. She has started taking pancreatic enzymes and definitely feels a bit of an improvement with them.
Have run across some interesting research into a specific probiotic, Lactobacillus Reuteri, having potentially significant immunomodulating properties, by researchers at Baylor College of Medicine and Texas Children's Hospital. So we bought some and she's taking that as well. Another article says L. Reuteri produces histamine from L-histidine which, strangely enough, reduces pro-inflammatory cytokines and reduces inflammation in the colon. After reading a lot on Mast Cell Activation Syndrome and mast cells and colitis, and low histamine diets and such, I'm scratching my head over this.
Lastly, I'm on a quest to try to find an immunologist who knows anything about IPEX. I don't think our LC and all the endocrine problems are a coincidence and independent. IPEX is traditionally known as an all-or-nothing genetic problem that shows up as endocrine and diarrhea problems in infants. But I've run across new publications that imply there may be lesser mutations of the FOXP3 gene that can manifest in adults. We did 23andMe and piped the results into SelfDecode, her FOXP3 gene is showing up at 4% of the population. Hmmm.
New Member, 19, Female, LC
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Hi Jane,
I'm fairly new to all of this, but a couple of things jumped out in your post and I wanted to respond.
Lilalda: My GI just switched my to Lilalda as the budesonide I've tried has had minimal effects. My GI recommended the highest dose of Lilalda to start, which I believe is 4.8 mg (once a day). Note that I am 32 yrs old. He also noted that the drug comes in different brands and types and some people respond better to different brands.
PCOS: I don't have pcos, but do have some hormonal imbalances, which was part of the reason for lowering my budesonide. And for sure, my diarrhea can be worse if my hormones aren't in check. Hormonal levels can be with blood tests, but it helps if the specialists can talk to each other.
Other supplements: I've had poor experiences with probiotics, but everything is so individual. I have been taking Boswellia Serata at my doctor's recommendation and have found that to be very useful. My GI doc recommended it as it helps with inflammation. I've had to push the dose pretty high (400mg 3 times a day), but have found it to be helpful. It reacts with certain medications, so I would check with you daughter's doctor before trying it.
Best of luck to you and your daughter -- it must be very hard at this young age!!
I'm fairly new to all of this, but a couple of things jumped out in your post and I wanted to respond.
Lilalda: My GI just switched my to Lilalda as the budesonide I've tried has had minimal effects. My GI recommended the highest dose of Lilalda to start, which I believe is 4.8 mg (once a day). Note that I am 32 yrs old. He also noted that the drug comes in different brands and types and some people respond better to different brands.
PCOS: I don't have pcos, but do have some hormonal imbalances, which was part of the reason for lowering my budesonide. And for sure, my diarrhea can be worse if my hormones aren't in check. Hormonal levels can be with blood tests, but it helps if the specialists can talk to each other.
Other supplements: I've had poor experiences with probiotics, but everything is so individual. I have been taking Boswellia Serata at my doctor's recommendation and have found that to be very useful. My GI doc recommended it as it helps with inflammation. I've had to push the dose pretty high (400mg 3 times a day), but have found it to be helpful. It reacts with certain medications, so I would check with you daughter's doctor before trying it.
Best of luck to you and your daughter -- it must be very hard at this young age!!
Oh, one thing I forgot! Yes, I'm familiar with celery juice. I would be interested if you try it? I believe the idea was started by someone called the "Medical Medium." (You can see him in a documentary called "Heal").
Before LC, I used to include fresh fruit and vegetable juices as part of my daily diet. I would juice some celery as part of that. Now raw vegetable juice is too much for my system. It's something that I miss very much, but I would personally be scared to try it!
Before LC, I used to include fresh fruit and vegetable juices as part of my daily diet. I would juice some celery as part of that. Now raw vegetable juice is too much for my system. It's something that I miss very much, but I would personally be scared to try it!
Thanks Lisa! Currently afraid to try celery juice as I believe she reacted to it last year. But now that she's on oral Ketotifen and Prednisone, the allergic-like reactions are very much reduced, though she's still afraid to try it. A factoid I recently read involved how the stomach adds a ton of acid to food to start breaking it down, then when the food moves out of the stomach into the duodenum, the pancreas secretes pancreatic enzymes but also carbonate to de-acidify the mixture to make it more neutral for the bacteria and the intestines downstream. Celery juice is very alkaline and may help de-acidify if the pancreas is not secreting enough carbonate and leaving the mixture too acidic for the bacteria and the intestines. That's as far as I got with my research so far.
I'm guessing that acid is still very important in the stomach, not having enough in the stomach to process the food can lead to other problems, perhaps celery juice or other alkaline items at the start of a meal to get them into place in the duodenum when the acidified meal itself finally passes through the stomach? That acid pre-treatment by the stomach can be a big problem for medicines and that is why some medicines have been specifically designed to resist dissolving until after it gets into a more pH neutral environment.
Food for thought, har har.
I'm guessing that acid is still very important in the stomach, not having enough in the stomach to process the food can lead to other problems, perhaps celery juice or other alkaline items at the start of a meal to get them into place in the duodenum when the acidified meal itself finally passes through the stomach? That acid pre-treatment by the stomach can be a big problem for medicines and that is why some medicines have been specifically designed to resist dissolving until after it gets into a more pH neutral environment.
Food for thought, har har.