tiredofdoctors

OMG! I haven't visited the forum in SOOOOO long, and it is so good to see that this thread is still going strong!!!!! You guys rock!

xoxoxoxoxo

Lynne

Welcome! I think you will find that this forum has some of the best, most kind, caring and knowledgeable people you will find. When I was in the process of being diagnosed, I honestly don't know what I would have done without them. I met my best friends through this forum.

Please know that you are NOT alone . . . and that you are in glad company. Just watch out during the full moon . . . . . . . . . .

Lynne

As far as I know, everything else is fine, even the strips. It's just the smalls.

Since a well-known friend of ours is having difficulty getting Altoids up in the North , I thought I would purchase some for her and send them there.

PLEASE NOTE: The tins I purchased of Altoids Smalls specifically state that they contain Wheat Maltodextrin.

The Altoids gum contains Isomalt -- I was a little concerned because I have been chewing that, as well -- but I Google'd it, and found this, so it looks okay:

Open Original Shared Link

If you have Altoids Smalls, please check the ingredients on the back. Just trying to keep my Sillyak friends healthy.

(And you guys thought I couldn't pull this off without being rediculous, didn't you????)

Angie, that is beautiful!! How cute is that?????

I have been told by the GI and the neurologist that my inability to poop is DEFINITELY related to the neurological celiac. I have almost no motility without using the Miralax. Before that, I would do the same as you are doing -- LOTS of veggies, at least 12-15 prunes per day, what felt like gallons of water and . . . . . NOTHING. I would end up after 10-12 days having to remove an impaction. Sorry, I told you it was grose.

Even WITH the Miralax, I went to the Neurologist two weeks ago, and she could not hear any peristaltic sounds (bowel sounds). She kept listening and listening, then finally found one spot on my abdomen that had some type of sound. She said that it is definitely related to all of the neurological dysfunction that I have. It makes sense . . . . I didn't start to have that problem until I started with the neurological symptoms --- the stumbling, falling and all the like. Before that? I never knew when I was going to have the big D!!

What I find amazing is that, even though I only tested positive for antigliadin antibodies, since being gluten-free, I haven't had diarrhea once. That's in almost two years. Granted, for two years prior to that I didn't poop, but . . . . . . I also don't remember if I had any bouts of diarrhea during that time. Wish I could remember. It would be really interesting to know.

Thanks, Andrea. I think I definitely am going to have the gene testing done. I am concerned with possible "glutening" -- my neurological symptoms are progressing, and my doctor would not test the antigliadin antibodies. He said I would ALWAYS have elevated antigliadin antibodies, and if I have been gluten-free, there's no point. My question was: What if I have been glutened from cross-contamination? He just poo-poo'ed that. Can they JUST test those antibodies, or do you have to order a panel??

Thank you so much for your help. If I test positive for the genes, I'm DEFINITELY having my kids tested -- even though they're 21 and 24. Explaining it to my son is going to be interesting . . . .!!!!

I have a question about Enterolab. It's kind of grose, but hey -- on this board we talk about poop enough that everyone is pretty comfortable with the subject.

I have neurological celiac. I have only elevated Antigliadin antibodies. My antitransglutaminase and antiendomysial antibodies were negative, and the biopsy(ies) on my small intestine were negative, as well. My GI even had a GI celiac specialist review the slides himself vs. just taking the pathologist's word for it. He did this mainly because I've had a life-long history of "irritable bowel", "ulcerative colitis" or "spastic colon".

My question is this: I've been gluten-free for almost two years. I do have products which contain casein, have stopped drinking milk because it makes a heinous rash appear on my face, and have tested positive on scratch tests to both milk and casein. My biggest question lies in this: Unless I take Miralax two times a day, I don't poop. At least not on my own. Ever. This is part of the neurological damage.

So -- all that garbage being said, can Enterolab still find antibodies, etc. after I've been off so many things for this long? Also, do they do the testing for genetic markers? My (former!) doctor's office only did bloodwork for HLA-DQ2 & HLA-DQ8 -- and no sub-categories. They didn't have the capacity to do HLA-DQ1, etc. Do you need a physician's order to have these tests run? Are they expensive? Have you been satisfied with the information they have supplied you?

Any help / suggestions you can give me would be greatly appreciated. Even being an "old-timer" with regard to my diagnosis time, I still have tons of questions. Thank you, Lynne

Lisa --

My celiac neurological trouble started with my eyesight. Then I had the balance issues, then the tremors. I strongly recommend that you see a COMPETENT neurologist, and soon. I may even ask him/her if they have treated patients with neurological celiac. It's not an unreasonable question. Sounds like you're ingesting some type of gluten, and it may be targeting those little Perkinje cells in your cerebellum.

Take care of you ---- you'd BETTER be okay!

Love,

Lynne

I think I would like to take you with me to my next Dr's appt. BRAVO!!!! Can I hire you?

I'll go with you, but you don't have to hire me!! I have gotten to the point that I can't stand when a professional demonstrates ignorance in his/her field. Given that I'm not even PRACTICING and I still read books, journals & trade publications, I find it INFURIATING that other professionals don't keep on top of their game. Plus, when I get angry, my voice gets very low, very quiet and my words are very succinct. Also, I try to "lose" my southern accent (Karen, not a word ). My son equates it to a volcano ready to erupt -- you just don't know when. I like that analogy!!

Give me a call -- I'll go with you!!!!!

I don't think I ever told anyone what a firebrand Lynne could be. I was having a problem with my local pharmacy over a RX that they kept wanting to give me gereric for. I was so frustrated. Lynne called them and told them she was my neice and it they did not give me the name brand, she was going to call corporate in Oakbrook, Il and lodge a complaint. I have never had a problem since. In fact they are absolutely wonderful to me. LOL.

Metta -- I forgot about that! I was hacked off . . . you were sick and they were being idiots. So, "neice" Lynne made a little call . . . .

Well, I never picked up my letter, and this weekend I received it through regular mail. Or actually, I DIDN'T receive it through regular mail

Here is my letter to my doctor. Sorry it's so long . . . . .

Dear Dr. :

Effective immediately, I no longer will be needing your medical services. I was very disappointed with the results of my most recent appointment with you. When I called to address this issue, I was referred to your office manager. After leaving voice mails and a message through another employee, these calls were never returned.

During my visit on ,I had several questions for which I needed answers, none of which I perceived were taken seriously. Each appeared to be brushed off as insignificant and when all else failed, it seemed as though you reverted to questioning my psychological condition. Sadly, you did not appear to understand that a neuropsychological evaluation is a very functional evaluation. It is designed to determine which areas of the brain are not functioning or coordinating properly. A MMPI is completed at the end of the session. As you will read on my report, it was well within normal limits. In addition, I have documentation from two Psychiatrists stating that my condition, and the symptoms with which I present, are not a result of a mental defect or

The person on this board that knows THE MOST about plants is Shirley! She can tell you about almost any plant there is. Jen and I depended upon her advice for the entire growing season two years ago!!

I'll try to remember her board name -- will contact a few people to find out, and you can PM her. She is AMAZING!!

From, what I thought, she was at the brink of death, the old girl has rallied. Maybe in the next few weeks she can come home, sit on her deck and look at the water and feed her ducks.

Never underestimate the power of the combination of prayer and the human spirit!!

Glad she's doing better, Lisa. Keep us posted.

Love,

Lynne

It makes me wonder if it's something in the BBQ flavoring -- either that or do they use the chips from the first run for BBQ???

I'm 20, but I DID sign paperwork releasing information to both my mom and my dad. They gave me a form, explained that if I wanted my info released to anyone, I should put their names and numbers on it and sign. That was done before I ever even met the GI. I get the feeling he just didn't want any arguments from angry parents :/

You can sign a form that prevents the office staff or the doctor from disclosing information to your parents with regard to your condition. They mark the chart (usually) with some brightly colored sticker so that everyone will know that you have one of these papers on file. HIPAA makes it VERY clear that once you sign this, no one is allowed to discuss with your parents your condition. The last thing you need, on top of battling an illness, is people who don't believe you. I've been there with my sister, who tried to convince my entire family that I had "conversion disorder" -- a Freudian concept which is not accepted by today's standards. At 20, you have the right to privacy. I treated patients who revoked permission to disclose information. It's more common than you think.

I'm anxious to hear how the scope goes (or went -- have been in a whirlwind lately) and hope you're doing well. Please take care of you.

((((((((((hugs))))))))))

Lynne

Oh no . . . . . . I eat Lundberg chips all the time. Since I don't have GI celiac, the only way to know if I've been "glutened" is either 1) through bloodwork or 2) more neurological damage.

My cranial reflexes are now GONE -- not only is it dangerous because they're protective, but it is indicative of a HUGE neurological problem. I just found that out when I went to the neurosurgeon. My eyes also have increased neurological trouble -- I found that out three weeks ago at the neuro-opthmalogist.

I HATE when companies do stuff like this. Why would they put people at risk like that? I am LIVID. I am also calling them tomorrow and addressing this with them.

Thank you for the information.

Lynne

I wonder what kind of free things you get at the strippers conferences, lap dances...poles...

You made me spit out Coke Zero all over my screen!!!!! That is SO funny!

Amanda, I am so sorry your sister is going through this. My sister had a very similar situation, except she had been married to the jerk 4 years before their first, 7 before their second. He was doing that kind of garbage the whole time. We had some idea, but we finally caught him -- when my sister was 4 months pregnant with their PLANNED second. We caught him with one of 4 girlfriends. Not so different from my situation . . . . . you'd think she would have learned. She learned my other bad habits!!

Seriously, your sister will get through this and will be much stronger for the experience. It's just a shame that she and her little baby girl have to be the ones who suffer because of this idiot. I admire her ability to carry out a plan as she is . . . . packing things little by little with little or no "hint" that they're leaving. That is VERY smart. She sounds as though she is doing everything correctly with regard to keeping herself safe.

In the meantime, while you are helping your sister and your friend with her new baby, don't forget to take care of YOU!!!!

xoxoxoxoxo,

Lynne

NoGluGirl: That is a GREAT list! And, those are fantastic ideas. I've been gluten-free almost two years, and I haven't used some of those ideas! Going to start immediately.

Also, all Hunts tomato products are gluten-free.

Softsoap antibacterial soap is gluten-free.

Watch out for Worcestershire sauce, soy sauce, things like that. Those are sources of "hidden" gluten. My dietician said that those are two biggies to watch.

The Clan Thompson software seems to be better than the Gluten Guard . . . . they used to follow up on items more often than the other. Don't know about it now. Also, they were really willing to work with you if there were items you wanted researched and listed in their next quarterly update. Don't know if you have a PDA, but they now support both Palm and (can't think of the word!) operating systems.

Don't know if this helps, but thought I'd let you know.

NoGluGirl: You ROCK!

NOT HEREDITARY??????????? The first question my GI asked me was if I had other family members who have had ANY type of "irritable bowel, ulcerative colitis, chronic diarrhea" or any diagnosis like those. He asked about ALL of them -- including my kids. He asked about their feeding histories, GI symptoms since they've been grown . . . . . then said we should go ahead and get a definitive diagnosis. I was scheduled to have my endoscopy and colonoscopy within four days. I had my bloodwork drawn that day. He did tell me not to go gluten-free before the endoscopy. He said that the turnover in the small intestine is VERY fast, and that if I had just small amounts of flattened villi, they could theoretically begin healing and he did NOT want that.

You need a new GI. Particularly if your dad came home that night in a "hinky" mood. (I know that's an old person term, but it sometimes works the best!) BTW: How old are you? If you are 18 or older, you have to SIGN that it is okay for your physician to share information with your father. Otherwise, he is NOT allowed to talk with him.

Please take care of you. I hope you get some definitive answers soon.

I am SOOOOOOO sorry. It does seem that, when your body gets used to not being "poisoned" on a regular basis, when it happens, the least little amount seems to bring about a fast & furious reaction. I don't have GI celiac, but even I have those types of reactions. I'm sending you cyber (((hugs))) and hoping that all goes better for you this week.

Don't know much about veterinary stuff, but, unfortunately am an EXPERT about our teacup poodle's anal sacs getting plugged. Oh, my goodness. YUCK. The vet says that the "musky" smell really bothers some people. MUSKY????? That's the last thing I call it. It is totally disgusting. I have had to learn to express them myself because it happens so often. It is enough to make you gag.

hannasue: I'm not an M.D. -- need to state that up-front! I'm a PT, had to take lots of differential diagnosis during school and chose to take more after school. Guess I just thought that it is something that is REALLY important!

It does sound as though it could be gallbladder related. Typically that kind of pain feels more "stabbing" in nature, and can almost take your breath away. Another thing that comes to mind is possible kidney stones. That can radiate up to your lower ribs, and can certainly hurt in the area in which you are describing. Having had them previously, I can say from experience that the pain can sort of "wax and wane", until you finally begin to actually pass the stone. It seems as though that while that little sucker is in there tumbling around, deciding whether its going to come on out, it can still cause some discomfort. During its descent through the ureters, it becomes much more uncomfortable. When it comes out? Think: peeing razor blades. Sorry, but that's what it felt like to me. I was working at the hospital when it happened, after having my doctor tell me that I had "quadratus lumborum spasm" the day before, and having a pretty bad night and morning. Advil did NOTHING to help!!

Teacher 1958: Having worked with women's health patients, I found that it wasn't unusual for patients to have that type of sensation in their left leg the way you described. It seems that the cecum of the colon is right where the nerves of the lumbosacral plexus nerve bundle starts splitting. When it is full, it can press on those nerves and cause some radicular symptoms like you described. Should you have them again, though, I would check with my primary care physician -- you don't want to let anything go unchecked -- just in case.

That's pretty interesting . . . I have "neurological celiac" -- I had only elevated antigliadin antibodies, but it did a number on my cerebellum. My biopsy(ies) were negative, as well. That's a pretty interesting difference between the two.

I still think that I have had celiac my entire life . . . was always diagnosed with "nervous stomach", "too many antibiotics", "irritable bowel syndrome", "ulcerative colitis" as reasons for the big D. Interestingly, in the almost two years I've been gluten-free, I haven't had it once.

Thanks for a good article!

hannasue . . . .

I am sorry that you're feeling so AWFUL. I have some questions:

1) You said the pain gets worse if you move. When you go up and down stairs, does it hurt in your pubic bones as well? (I know that's weird, but it's a key factor in differential diagnosis)

2) You said it's 6" above your waist. Are you talking about the top of your hip bones, or the curve at your waist?

3) Is the pain located anywhere under your ribs?

4) Do you have pain in your back under your ribs?

5) Have you had difficulty with constipation since being gluten-free?

I know that these questions are intrusive -- if you would feel better PM'ing me, that's fine!

I'm getting ready to log off. My daughter is in town, and I'm going to go hang out with her. I'll check back as soon as I get home.

I read this one when I went to Temple with my friend:

Pray as if the world depended on God.

Act as if the world depended on you.