Today marks 6 weeks post-biopsy, and 6 weeks on the gluten-free diet. On the bright side, I have seen some gradual improvement in GI symptoms- the rumbling, gas & bloating that I used to get after most meals seems almost totally gone. Additionally, I'm starting to have stretches where rather than having 3-5 bowel movements daily (my previous "normal"), I'll have only a single BM/day for several days in a row. I still have days with 3-4 BMs, but they're getting rarer.
I had a follow-up visit with the gastroenterologist this afternoon. Based on the GI improvement mentioned above, she feels that "it's likely you have (Celiac) Sprue", even though the biopsy labwork was unable to confirm it. So she wants me to stay the course on the GF-diet and check back with her in about 3 months. She also ordered the Celiac genetic test, for which I had blood drawn today.
On my way out I asked for copies of my biopsy results. You can view them here. Sitting in the parking lot reading them over I found this interesting phrase: "Mild villous blunting"! Isn't this pretty much indicative of Celiac? Does that mean she visually observed blunting during the procedure? Is that even possible? Why didn't she mention this before? Why doesn't the pathologist's report seem to agree with this? I wish I had discovered this during the appointment rather than afterwards in the parking lot. This was pretty surprising, since she told me the biopsy had been totally normal. I'm very interested in hearing from my readers what the significance of "mild villous blunting" might be.
So in addition to the GI improvement I mentioned, I've also seen some occasional improvement in my dexterity. This will last a day or so, then revert back to feeling like I'm typing with mittens on. Perhaps related to this, my neurologist also remarked that my left-side reflexes have recently improved (they were a bit exagerated previously).
Sadly though, I've had no improvement in fatigue; in fact, it seems a lot worse than before I started the diet. I spent most of last week sitting on the couch staring at the wall. I've been totally unable to work the past week or so. My employer has so far been understanding, but I've burned through nearly all of my PTO at this point. It's a tiny company, and I doubt they can afford to keep me on for much longer in this state of non-productivity.
I'm really quite freaked out about being unable to work. So I made an appointment with a psychologist that specializes in chronic fatigue/pain issues. I didn't have a lot of success with this kind of therapy in the past, but I'm not sure what else to do. I'll report back on that in another posting.
Thanks for reading.
Subscribe to:
Post Comments (Atom)
Posts
i'd say you have celiac, and as a result of that, leaky gut, and as a result of that, several more secondary food allergies. in my case, i also became allergic to all dairy and eggs. dairy is *extremely* important to avoid if you have leaky gut! also, as a consequence of the above, you likely have gut disbyosis and a lack of stomach acid and/or enzymes. take tons of high-potency, broad spectrum probiotics plus a digestive enzyme complex with each meal. in addition, you may also likely have fructose malabsorption (best you google it for recommendations on what to avoid). as a consequence of all of this, i'd recommend you follow a paleo diet (meats, fish, veggies, fruits, some nuts), plus try to re-fill each nutrient that you are likely to be deficient in now after decades of celiac. you pretty much need to take megadoses of all relevant vitamins and minerals and see how you improve (or not) and/or what the lab tests say. most important ones are B12, folic acid, iron, B6, zinc, manganese, magnesium, iodine. you need to be 100% sure you are not deficient anymore in those. and all others as well of course. meanwhile, there are tons of great supplements that can bring your energy levels back to near normal (sometimes even better lol), but taking those might interfere with the diagnosis and treatment of your deficiencies and symptoms. also, be sure to check for hashimoto's before you take more than 1mg of iodine. if you're negative for H., you can easily build up to 50mg of an iodine supplement like IOSOL for like 3 month, which can kill all sorts of chronic infections (google and study this regime it first).
ReplyDeleteah, and the ultra-important vitamin D of course. but you know that already. i'd aim for 50-60ng, which usually takes 5'000-10'000IU of D3 a day. try to do a lab test end of summer and end of winter to find the proper dosage level.
ReplyDeletealso, just stumbled over your thyroid results. you're clearly sub-clinically hypo-thyroid. if your doctor said those values look normal, he/she sucks! TSH of 4.1 is way too high to look normal (everything above 2.0 is clearly suspicious), and your fT4 is also at the lower end. my recommendation: do the Hashimoto's check. if positive, STAY OFF GLUTEN for life, and take a T4 medication (if it doesn't help, try dessicated porcine T4/T3). if it's negative, try taking a iodine supplement as described above.
ReplyDeleteThanks for the comments qualia. Why do you think a TSH of 4.1 is too high? The normal range (at least according to the lab that did the test) is 0.3-5.0. I have considered asking for an increase in Thyroid meds, though my current doc would never allow it.
ReplyDeletea TSH level *alone* (without context) doesn't tell much about ones thyroid status (except that everything above 2 is certainly already suspicious). however, as far as i can see you were at below 0.5, with fT4 in the upper range not even a year ago?? is that correct? how does your doc explain THAT? did you get examined/diagnoses for hashimoto's? if not, that would be another reason why your doc sucks. 90% with clinical hypo-thyroidism (and TSH's jumping all over the place) also have hashimoto's, which is extremely important to know if you want to keep your thyroid gland long term.. now, your TSH is 4.1 (current reference range is 0.5-3.0 btw, see http://is.gd/em2TH ), which, together with your continuing fatigue and low fT4 is a strong indication that you are not yet on the proper thyroid medication level, or that T4 alone is not working for you and you need T4/T3 (see http://is.gd/em1vm ), or that there is another underlying cause for your hypo (there are around 24 different possible causes for hypo, of which hashimoto's is by far the most likely, even more so if you are sensitive to gluten/have celiac!).
ReplyDeleteanother factor simply might be iodine deficiency, and/or adrenal gland insufficiency. so to sum it up: you need to increase, or change your thyroid medication until your fatigue is 100% resolved, and/or find the remaining causes. don't let your doc tell you "your TSH is good enough"! it's good enough when it resolves your fatigue, without causing over-stimulation, period. also, get tested for hashimoto at the next occasion (but preferably with a doc that is actually competent in this area). also, try to make yourself an expert about all the topics mentioned above. there is lots of great information out there. don't just rely on the questionable competence of your doc, expecially wwith regard to thyroid and celiac.
I actually do have a Hashimoto's diagnosis, and have been taking Synthroid and Cytomel for it. The T3/T4/TSH was different on the older bloodwork because the doc (previous doctor, not my current one) was adjusting the meds. My current doctor (an endocrinologist) thinks the current levels are perfect.
ReplyDeleteI am interested in tweaking my medication into a "more perfect" range, and I'm hoping that the new doc I'll be seeing in September will be amenable to that.
Thanks for your comments.
i see.. didn't know you already have a H. diagnosis :) so, if you're smart, you stay off gluten 100% forever, because those are usually the same antibodies that get activated. it takes up to 6 month for them to calm down after stopping gluten. and if you increase your vitamin D3 level into the upper norm range, say, 80ng, there's even a chance that it goes away completely (high vitamin D levels act strongly anti-immune). how much vitamin D3 to you take currently? you need to make sure to get into that upper range and stay there until at least the fatigue problems have resolved! i'd also stay off all dairy for now if i was you, except if you want to have joint problems next. and as in my case, dairy is actually the MAIN cause of acute fatigue. you need to do a food log (at least in your mind) and see how your energy changes for every different food you eat, and exclude all that drag you down. hope you get better soon :)
ReplyDeletebtw, you need to listen to this live show which starts in 2 hours or so: http://www.blogtalkradio.com/undergroundwellness/2010/08/19/why-do-i-still-have-thyroid-symptoms-with-dr-datis
ReplyDeletefyi: if you miss the show, you can listen to it later as podcast.
I am a medical laboratory scientist who happened to stumble across these posts. Please remember that reference ranges vary per laboratory and there is no specific range for each test. You are correct in reading the range listed on your lab print offs. This is the range that is determined normal from this specific laboratory. Interpretation about standard reference range is not correct and this is why patients so commonly worry. Also keep in mind that low end or high end of normal results are still normal. There is not interpretation or extrapolation beyond this point. You are still normal within this range, whether you are high or low. This is why ranges are standardized per lab. I would suggest to everyone a good site that is kept up by laborations such as myself for questions/concerns regarding ranges and bloodwork/disease or condition information(www.labtestsonline.org). You can also ask questions to my fellow laboratorians regarding laboratory results and their interpretation and receive answers by the experts in our field. Thank you for your postings...I am experiencing Celiac symptoms and appreciate all of the real life information.
ReplyDelete