A Couple Of Random Questions

[wonkabar]

Hi! I'm trying to jot stuff down and get my ducks in a row so I have all the info I need when I go to the GI on Thursday. So here go my random questions...........

1) Should I bring my son's Enterolab results in addition to my negative/inconclusive labs??

2) Does anybody have an issue with not properly metabolizing Folic Acid? After tons of bloodwork and a couple of tests, that *is* one thing that my OB definitively found out about me prior to my 2nd and 3rd pregnancies. I had to supplement my Folic Acid intake in addition to my prenates.

3) How are you defining "hair loss"?? Is it clumps and bald spots? Or, is it pulling out a scrunchy and always having hair tangled up in it. Or, is it detangling my hair when shampooing/conditioning and always having hair tangled up in my fingers. Very often I have to actually gather the hair from the drain as it would never go down. I don't believe that it's related to not getting enough protein...I eat plenty of meats and cheeses. (I just had a full panel of labs done and it appears that my thyroid, iron, etc are all normal.)

4) Does anybody have difficulty getting up on their feet in the morning? I'm usually really stiff for the lack of a better way to explain it. There are times that it's really uncomfortable and I feel as if I can't bear all of my weight on my legs/feet with I first get up. It's really weird.

5) The GI that I'm going to came highly reccommended by a family friend and specializes in Celiac Disease. That being said, is there anything you GI- veterans would want to pass along to me prior to my appointment??

6) How would you rate your urgency to get to the bathroom? (EDIT--bowel movements) Lately it seems as if I get the sensation to go and there's no time to spare...cannot pass go and collect $200. It's urgent...like I'm flying through Target with my daughter in the cart to get to the bathroom. In fact, as horrified as I am by this, I *didn't* make it yesterday.

Geez, this is longer than I had aniticpated. THANK YOU in advance for your help!!

[LKelly8]

1) Should I bring my son's Enterolab results in addition to my negative/inconclusive labs??

Sure, your GI doc may scoff at the results or he may be fascinated, but an openminded physician should be willing to take it into consideration in any case. And there are some docs who use and accept Enterolab.

2) Does anybody have an issue with not properly metabolizing Folic Acid? Not me, sorry.

3) How are you defining "hair loss"?? Overall hairloss, thinning, the hair growing back in is a different texture (wiry) and slightly darker.

4) Does anybody have difficulty getting up on their feet in the morning? Yes, my rheumatoid arthritis doesn't do mornings.

5) The GI that I'm going to came highly reccommended by a family friend and specializes in Celiac Disease. That being said, is there anything you GI- veterans would want to pass along to me prior to my appointment?? Make yourself a health resume. Just like you would for a job. Vital stats at the top, including employment and insurance info. Summary of medical history - health milestones: place of birth, childhood illnesses, any hopitalizations, list of all medicines ever taken, etc. Short paragraph describing your current condition/problems. Last, a single sentence describing what you want/hope to get out of this appointment, be realistic and honest. I know it sounds like a bit much but doctors love it.

6) How would you rate your urgency to get to the bathroom? The time I have to get to a bathroom before things get ugly gets shorter every year (I'm 37). Sneezing and/or laughing really hard can be dangerous, it's very difficult not to look startled.

Geez, this is longer than I had aniticpated. THANK YOU in advance for your input!!

Your welcome.

[Nooner]

Wonkabar,

I took my Enterolab results with me and wrote up a one page history of my history, symptoms and dietary responses, along with doctors I'd seen and various misdiagnoses over the years. LKelly8 is right, they love that stuff! Plus you are less likely to forget things during the appointment. The GI I went to was highly recommended by members of a local celiac support group, and also had a reputation for trusting Enterolab. The fact that your GI is a celiac specialist hopefully means he knows this disease presents itself in a lot of ways, and might be open to Enterolab. Good luck!

Yes, I have joint aches when I get glutened. One of the first things I noticed after going gluten free was that my hips, ankles and shoulders stopped aching. I never have been diagnosed with arthritis, I just was really stiff, especially in the morning. I also had hair loss, in my case alopecia areata, since I was 14. If you're not familiar, it's "patchy baldness" and an autoimmune disorder. My GI was very interested to find that out. Even though there's not a direct link (so far), he said the fact that I have one autoimmune condition predisposes me to others. For me, the bald patches come and go, right now they are in a "go" phase, and I haven't been gluten free long enough to notice a change.

~Li

[wonkabar]

Thanks! I haven't been tested through Enterolab myself...just my son. I thought that his results would bring a little more valididty as to why I wanted to be screened. I'll definitely write up information to bring with me; that's why I've put out a couple of these questions. I want to have as much info with me as possible not to mention I'm bound to forget something without a list. I've done the list "thing" before and it's been very helpful to me.

I hope to get more replies before Thursday!

[wonkabar]

I hope to get more replies before Thursday!

I know this probably isn't the most interesting thread, but *any* advice you could offer regarding my GI visit would be helpful. I'm not quite sure how to make this thread more exciting or inviting, but I honestly did think I'd get more than two replies. It's rather discouraging. Thank you to the two people who did reply!

When I first joined this forum in May due to my son's issues with gluten, I found a whole lot of support and answers and was excited to log on and "chat". I told everyone about this forum and of the help/support I got. Unfortunately, the need to log on and "chat" isn't all that overwhelming anymore as I'm just not getting the warm fuzzies from this forum anymore. I usually check in just to see what kind of topics are floating around, but, lately, it often seems as if only certain threads/questions are getting replies. I've been very disappointed lately. Oh well...........

[azmom3]

Hi Wonkabar,

I have felt the same way when I've posted things, too, and yes, it's frustrating when you're looking for answers. Keep in mind that your post and replies (even if there aren't many) are helping other people. There are many times I read, but don't respond because I don't know the answers, but I check back often to see if someone else does. You might try reposting either in another area or with a different title that might grab more people's attention. Look at other ones that are getting alot of response and see what they're doing in their titles....maybe reaching out to any veterans on this site???? If none of this works, look at it this way....you must be really smart to ask questions that nobody knows the answer to. I know you'd rather have the answers. Good Luck!

[Canadian Karen]

Hi! I'm trying to jot stuff down and get my ducks in a row so I have all the info I need when I go to the GI on Thursday. So here go my random questions...........

1) Should I bring my son's Enterolab results in addition to my negative/inconclusive labs??

If this doctor is well versed in celiac disease, he should be receptive to Enterlab results, so yes, bring them along. It also shows the doctor that you are not just "grasping at straws", you have what you view as valid medical confirmation......

2) Does anybody have an issue with not properly metabolizing Folic Acid? After tons of bloodwork and a couple of tests, that *is* one thing that my OB definitively found out about me prior to my 2nd and 3rd pregnancies. I had to supplement my Folic Acid intake in addition to my prenates.

I also had to do this. But then again, I am severely anemic and my GI specialist is about to start me on IV systemic iron.....

3) How are you defining "hair loss"?? Is it clumps and bald spots? Or, is it pulling out a scrunchy and always having hair tangled up in it. Or, is it detangling my hair when shampooing/conditioning and always having hair tangled up in my fingers. Very often I have to actually gather the hair from the drain as it would never go down. I don't believe that it's related to not getting enough protein...I eat plenty of meats and cheeses. (I just had a full panel of labs done and it appears that my thyroid, iron, etc are all normal.)

I also have hair loss, but I have always chalked that up to my thyroid (I am hypothryoid). I have recently been doing research on this thanks to some really great links some people on this site have given out, and I am now convinced that not only is my Eltroxine not sufficient to control it (it only controls the T3's), but also my adrenal glands are either fatigued or exhausted..... I have started taking some herbal supplements in the hopes of it giving me moure energy (instead of feeling like I'm going to fall asleep at the wheel!). So far, I have actually noticed a bit of an improvement - hoping the improvement will increase in time..... Check out www.stopthethyroidmadness.com

4) Does anybody have difficulty getting up on their feet in the morning? I'm usually really stiff for the lack of a better way to explain it. There are times that it's really uncomfortable and I feel as if I can't bear all of my weight on my legs/feet with I first get up. It's really weird.

I sometimes get this - when I wake up and get out of bed, I feel like I am an 80 yr old woman, every bone in my body creaks, aches for the first 10 minutes until I really get going.....

5) The GI that I'm going to came highly reccommended by a family friend and specializes in Celiac Disease. That being said, is there anything you GI- veterans would want to pass along to me prior to my appointment??

Can't think of any - you're lucky to find one who specializes in celiac, though......

6) How would you rate your urgency to get to the bathroom? (EDIT--bowel movements) Lately it seems as if I get the sensation to go and there's no time to spare...cannot pass go and collect $200. It's urgent...like I'm flying through Target with my daughter in the cart to get to the bathroom. In fact, as horrified as I am by this, I *didn't* make it yesterday.

Ha! You are talking to the Queen of Diarrhea! Mind you, I have collagenous colitis, so I kind of have a double whammy..... Oh, by the way, if the GI is going to do a colonoscopy on you, make sure you ask him to take some biopsies to check to make sure you don't also have collagenous colitis (it can only be seen by a pathologist through a microscope).

I should mention, regarding the diarrhea, I have gotten to the point where I have total fecal incontinence - can't hold it in no matter how hard I squeeze..... I spend a fortune on Depends.....

Geez, this is longer than I had aniticpated. THANK YOU in advance for your help!!

[wonkabar]

Thank you for your reply, Karen!

As terrible as it is, I not only want enough info to bring to the doctor, but based on the awful experience with my son's ped. GI, I feel as if I need to go in with a "pre-emptive attack". Not all doctors are idiots...not by any means. However with something as peripheral as Celiac Disease to many of them, I wanted to make sure I get the biggest bang for my buck!!

I don't think there's anything wrong with my Thyroid. The "hair loss" that I have is just how I explained it and my labs came back normal.

The other biggie for me is just being plain old tired. I'm just pooped all the time. Yes, I have a 3 1/2 year old and 21 month old, but it's different. I'm just tired...period. It often doesn't seem to matter if I get a good night's sleep. I feel very tired overall and often by midday I'm ready for a nap! There are times I feel so tired that my body aches.

Here are a couple more "things" I wanted to bring up to the doctor. These have been previously posted, but, again, didn't seem to grab anyone's attention...

-Dx with anxiety disorder last summer

-pre-term labor and premature births with both children...no medical cause

-lots of gas

-numbness/tingling in right hand and arm

[Canadian Karen]

I can SOOOOOO talk to you about those things you listed, but gotta get the girls to school first. Will post soon.....

Hugs.

Karen

[wonkabar]

Hi Wonkabar,

I have felt the same way when I've posted things, too, and yes, it's frustrating when you're looking for answers. Keep in mind that your post and replies (even if there aren't many) are helping other people. There are many times I read, but don't respond because I don't know the answers, but I check back often to see if someone else does. You might try reposting either in another area or with a different title that might grab more people's attention. Look at other ones that are getting alot of response and see what they're doing in their titles....maybe reaching out to any veterans on this site???? If none of this works, look at it this way....you must be really smart to ask questions that nobody knows the answer to. I know you'd rather have the answers. Good Luck!

Thanks for empathizing! I'm honestly not sure how to make these posts more interesting; I've seen tons of replies on posts that didn't have exciting titles. I truly don't think I should have to figure out a way to make them more interesting...it is what it is. Honestly, what seems to have happened in the past few months is that this forum has become more of a cyber-social circle versus a support/informational forum. I'm certainly not saying that people shouldn't become friends via this forum. However, what I am saying is that it appears that there's more of a social aspect to things now and that real reason for this forum has been lost to an extent. It also seems as if certain posters get more replies and if certain posters reply to threads that seems to elicit more replies from others. I'm just generally disappointed right now. And quite frankly, I don't know if I'd remain on this forum for support if I am in fact gluten sensitive or have Celiac Disease. I shouldn't have to beg for replies. If the level of "support" I'm receiving now is any indcation to the support I'd receive in the future, it leaves a lot to be desired and doesn't inspire a lot of confidence in this forum.

What I am hoping to happen is that the board moderators or Celiac veterans read this and take what I'm saying to heart. What may seem to be old-had and old news to them isn't the case for people who are going through the diagnostic process and have questions. They've all been overwhelmed and unsure with lots of questions, too. It's nice to see that many people are getting some level of support through their friends, however that doesn't help those of us who still have questions that may not be important to them, but *are* important to us.

I can SOOOOOO talk to you about those things you listed, but gotta get the girls to school first. Will post soon.....

Hugs.

Karen

OMG, THANK YOU!! I have to get Zachary ready for school and Allison to the doctor this morning, but I *will* be back!!

[Guest nini]

wonkabar, I don't have the answers to your questions, I think you are maybe being overly sensitive about posts being ignored... this is a VERY busy board and is extremely difficult to keep up with everyone's new posts. I try my best, but I missed this one. (when I logged in today there were 7 pages of new posts...) I didn't see it until just now and I don't know what to tell you. My personal experience has been that of being completely dismissed by most Dr.s. When I went to the Dr. that dx'ed me with celiac I had no expectations because I really didn't know much about celiac and didn't want to believe that my health problems had anything to do with what I was eating. My personal opinion is to try the diet regardless of what the Dr.s say. But if you are wanting to pursue testing, obviously don't start the diet yet. I don't know much about enterolab, but I do know unfortunately a lot of Dr.s won't accept it as a dx.

I like the idea of a "health resume" I wish I had thought of doing something like that with my Dr.s... I guess just ask whatever questions you feel are important to you.

[Canadian Karen]

The other biggie for me is just being plain old tired. I'm just pooped all the time. Yes, I have a 3 1/2 year old and 21 month old, but it's different. I'm just tired...period. It often doesn't seem to matter if I get a good night's sleep. I feel very tired overall and often by midday I'm ready for a nap! There are times I feel so tired that my body aches.

Here are a couple more "things" I wanted to bring up to the doctor. These have been previously posted, but, again, didn't seem to grab anyone's attention...

-Dx with anxiety disorder last summer

-pre-term labor and premature births with both children...no medical cause

-lots of gas

-numbness/tingling in right hand and arm

You have to keep in mind that alot of times myself and probably others as well don't feel comfortable answering certain questions, as (in my case anyway), all the things you are "supposed to do" to find improvement, just simply have not worked. In fact, due to years and years of misdiagnosis, I have just recently been confirmed to have refractory celiac sprue, so sometimes I feel like a hypocrite posting "Oh, do this and everything will be okay" because in my case, it doesn't work for me . I sometimes feel like I have lost the right to post advice because I can't honestly say "Well, this worked for me......" Of course, I can't speak for others, but that's the case for me.....

I will give you a bit of a run-down about me:

As a child, I was always very tiny, my parents thought I was never going to grow. Also, I had severe constipation. I also was a very picky eater, and the only thing I would eat would be potatoes (breakfast, lunch and dinner was McCain french fries in the oven!). The pediatrician told Mom to just keep on feeding my that and eventually I would grow out of it.

I didn't present with more problems again until my late teens, early 20's. I had recurrent boils and also developed endometriosis. In fact, when I was 20, I was told I would have a 50/50 chance of EVER being able to conceive (HA! Look at my signature!) I also developed spinal stenosis, which at the time, I thought was a result of all the baseball I was playing (e.g. diving for balls, etc.). The ortopedic surgeon told me that someone my age (20 at the time) developed spinal stenosis, that it was probably there from birth (a birth defect). Back problems run rampant in my mom's side of the family.

In my early 20's, I did alot of travelling with my friends. Every year, it was a different Carribean island. The year I went to Jamaica, I got food poisoning, and that was the beginning of the hell that I am still going through. My system never recovered from it, and basically, from then on, it has been chronic, watery diarrhea. I have not had a solid BM in well over a decade, it has been nothing but water, LOTS OF IT (20 times a day, keeping me up at nights, etc.).

I was first diagnosed with celiac at this time, but after 2 years on the gluten-free diet, was told, "Okay, it's not that (so off the gluten-free diet I went), maybe it's Crohns, then maybe it's Colitis, then this, then that, and the rollercoaster continued until 2003-2004 when bloodwork confirmed celiac disease once again (my numbers were well over 100). I have been gluten free since then, but still no success.

After being referred to a second GI specialist (he is a professor at St. Mike's Hospital in Toronto and apparently, one the of the best in the country), he discovered I also had collagenous colitis, confirmed by biopsy taken during a colonoscopy. We tried every single treatment for it, including different steriods, but it just won't get under control. I have nothing but water for BM's still.

I had another endoscopy in August, and the biopsies confirmed from that although I have been gluten-free for years and my antibody bloodwork is within normal range (last check, my number was 13), my body has not responded at all - hence the refractory celiac sprue diagnosis.

Also, all during these things happening, I developed hypothyroidism in 1992. Right after my wedding, I really started feeling depressed and tired. I thought is was just post wedding blues..... Went to doctor and they discovered my hypothyroidism. I have also been battling depression for years, currently taking Prozac and Wellbutrin. I am particularly worse from November to February (SAD - Seasonal Affective Disorder).

Regarding premature births, both my girls were full term, but the boys (twins) were born 9 weeks early and both weighed 3 lbs. 12 oz.. Now whether they were preemies due to being twins, or due to me being 37 and celiac for years, I don't know....... So far, none of my children are exhibiting obvious signs of celiac disease, but I do have my suspicions about Rhiannon, as she is also tiny for her age and has a history of constipation, but so far bloodwork is negative for her.

I am currently trying to supplement with two products called AdrenaSense and ThyroSense. Here is a link to some interesting info:

Open Original Shared Link

Also, my GI specialist will soon be starting me on IV iron as I am totally unable to absorb any iron in food form, pill form or liquid form. My anemia is severe......

Oh, regarding the gas, I also suffer endlessly with this. My stomach sometimes sounds like a thunderstorm in there! I find Gas-X Gelcaps and postural positioning really helps with this. I lay on the floor on my right side with my left leg raised up, right leg straight and my arms raised above my head. Stay like that for about 5 minutes, flip onto your back, lay flat for 5 minutes, then flip on your left side and stay like that for 5 minutes. This works by moving the gas through your intestinal tract, guiding through to where it can exit. Works wonders for me......

I also get tingling/numbness, basically all on the right side. Alot of joint pain also. I attribute it to my malabsorption issues...... Usually, it starts in my neck.

Okay, I have rambled enough! One more thing I would mention is if you do a search on the board for specific things you are looking for like "gas" or "numbness/tingling" you will get a wealth of threads come up with everyone's experiences already spelled out.......

OMG, I have SOOOOOOOOOOOOOOOO rambled! Sorry! If you have any questions, feel free to PM me or post directly!

Hugs.

Karen

[Canadian Karen]

Oops! Forgot to add something:

In my early 20's I also developed severe panic attacks, particularly while I was driving. As soon as I tried to get onto the highway, I would just lose it! My panic attacks were so bad, I thought for sure I was dying, and the only person who could calm me down was my sister. I would feel a panic attack coming on, and even sitting down wasn't good enough for me, I had to lay down on the floor and the whole room would be spinning. I haven't had any of them since going on Prozac though. It might have something to do with the fact that my family has a history of low seratonin levels in the brain, so I think Prozac is an absolute must for me.

Hugs!

Karen

[wonkabar]

Wow, Karen! You've sure been through a lot! I hope you've started to feel better. It still amazes me that someone could be that sick and no one can figure out why. This must've been very scary. Thanks for sharing! And, no, you didn't ramble. It's easy to type a lot and not know it!

Thanks for the search tip; I'll certainly give that a try!

Really, the reason I'm going to the gi is to follow-up on the fact that my son had to get his issues with gluten and the Celiac gene from one of us. These various "symptoms" could be nothing or they could be something; I just don't know. Had I not researched Celiac Disease for my son, I would've never even known that these variables could be related. It's all very puzzling at times.

[Canadian Karen]

Whenever you have malabsorption due to celiac disease, you are susceptible to a myriad of complications from malabsorption. Each vitamin you are defficient in affects a different area of your body. Yes, it does get complicated!

Hugs.

Karen

[wonkabar]

wonkabar, I don't have the answers to your questions, I think you are maybe being overly sensitive about posts being ignored... this is a VERY busy board and is extremely difficult to keep up with everyone's new posts. I try my best, but I missed this one. (when I logged in today there were 7 pages of new posts...) I didn't see it until just now and I don't know what to tell you. My personal experience has been that of being completely dismissed by most Dr.s. When I went to the Dr. that dx'ed me with celiac I had no expectations because I really didn't know much about celiac and didn't want to believe that my health problems had anything to do with what I was eating. My personal opinion is to try the diet regardless of what the Dr.s say. But if you are wanting to pursue testing, obviously don't start the diet yet. I don't know much about enterolab, but I do know unfortunately a lot of Dr.s won't accept it as a dx.

I like the idea of a "health resume" I wish I had thought of doing something like that with my Dr.s... I guess just ask whatever questions you feel are important to you.

I do appreciate your honesty, but this truly wasn't about being overly sensitive or being angry about it. I have a lot more things going on in my life that I could be sensitive to or could create stress...trust me, this isn't one of them! It was simply a frank opinion and put out there as food for thought; I'm a big believer in perspective. No one owes me or anyone else an explanation; that certainly wasn't the intent of this post. I've just felt for quite some time that the overall climate of this forum has changed which *is* discouraging, at least to me anyway.

This post wasn't meant to offend anyone, and if it did I do apologize. Everyone on this forum seems to be very honest about things so I felt I could be, too.

[Terch]

Hi Karen,

I just wanted to say that just when you think that you have it bad you read about someone else. I am so sorry about your troubles and your long journey. I hope that someday you find some resolution to your ill health. My prayers are with you.