GI visit was a bust

[darcijj]

should not have wasted my time..

This doctor of course immediately went to IBS as a diagnosis.. IBS can account for the gastro symptoms maybe, but as far as I know IBS does not cause neuro symptoms.. it does not damage the lining of the intestines. He kept asking IBS targeted questions and making IBS comments, oh that is IBS related, etc. and I kept steering the conversation back to Celiac's... he did agree to give me a slip for the Celiac blood tests, I think just to "appease" me, not because he thought it was a possibility.

He also advised me to eat more fiber & bran and gave me metamucil samples... first ingredient is Wheat Flour! I do have a spot of abdominal pain that started on Friday. It's on the left side.. Severity goes up and down, nothing seems to relieve it.. He said that indicated IBS.. that is something I am not sure on.. I thought it was more indicative of diverticulitis.

No instructions on the celiac test.. to keep eating gluten until then, etc.. only advice was to eat the fiber and take the metamucil to relieve the IBS symptoms .. also.. wants to do a colonoscopy. Which is 2 months away. I scheduled it.. but after I left there I am like. why bother? I cannot keep eating gluten another 2 months Just so they can do the colonoscopy and then maybe think about the biopsy for Celiac's!!!

So, back on gluten.. I mentioned my experience with gluten and also brought a typed medical history.. see below.. oh and he noticed I was taking medicine for thyroid disease.. still no comments from Him on a possible autoimmune link between thyroid disease and Celiacs.

I will get that blood test done and then order my own tests from Entro lab.. once I have done what I need to for the tests, no more gluten. I guess I will be self diagnosing.

Oh and he did ask if I was gaining or losing weight.. I said gaining.. maybe I should have said Losing instead!


Medical History

1987 – Developed allergies after my daughter was born. Ragweed, dust, cats, grass, etc. Did allergy shots for a while
1997 Tested again for allergies, tested positive for more items second time. New allergies: potatoes, mustard, mold, birch trees.

1994- Bout of depression, put on Zoloft after some trial and error. On and off anti-depressants since. Currently on Zoloft and Trazodone (for insomnia)


2000-2001 – Gradual onset of extreme fatigue, weigh gain, low body temp (96.2), dry skin, concentration problems, memory difficulties, slow growth of body hair, joint pain- fingers, hips, ankles.

In 2001 put on Armour thyroid. Levels of dosage adjusted until right one found. Took a couple months. Symptoms abated over time.

After 6 months went on strict low carb diet to lose weight. Followed plan to the T. Gradually lost weight and felt better than I had in years.

2004- Most of the weight I wanted to lose was gone. Slowly introduced some carbs/foods back in: shredded wheat, rye bread, low sugar granola bars, etc.

2005- Went to see Primary doctor for leg pain. Left leg mostly, extremely cold in the foot to knee, almost burning. Leg would ache terribly at night. No cause found.

2006- Some numbness & tingling in middle of back, shoulder area.

April 2007- started therapy for Rotator Cuff tendonitis, made it worse and stopped. Advised by Primary to rest and limit activity for shoulder to heal.

Sept 2007- after working on a home improvement project in Sept (very hot day) became very fatigued. Couple days later these symptoms appeared:


Muscle spasms, extreme in left foot instep.
Leg pain
Numbness/ tingling- legs & arms
Electric like shocks that would pop up in various areas
Shooting needle like pains
Headaches
When looking down a electric like sensation down the back of my left leg into my foot


Since September:

Still have muscle spasms in foot
Joint Pain- hips, ankles
Numbness/tingling comes and goes
Leg pain on occasion
Left side of face goes numb on occasion
Fatigue comes and goes
Headaches
Vibration like sensations in legs

Gastric symptoms:

I have not discussed these with a doctor. Had these symptoms on and off for years.. could not pinpoint to anything specific as far as foods.. I eventually attributed it to Milk products.. really did not think it was important, thought this was probably normal for most people to have occasionally:


Gas/Flatulence- most often symptom
Gas Pains
Loose Stools- most often
Diarrhea – almost water like sometimes
Constipation on occasion
Floating stools- not all the time
Foul smelling stools
Mucus with stools- sometimes
Stomach rumbling after eating

[aklap]

Hi Darci,

Sorry to hear your doctor visit was....frustrating...to say the least. Maybe another doctor might be in order

Have you seen a neuro about all the neuro stuff going on?
Have they checked you for Lymes Disease? http://www.medhelp.org/forums/neuro/messages/32336.html
Have they checked your B12? B12 defic. can cause all sorts of neuro issues.

I had [and still have] many of your neuro sx's. Some of them cleared up going GF, some of the have not. I have ideopathic peripheral neuropathy.

Doing a colonscopy is a good idea. That way they'd be able to check for diverticulosis [pockets in your colon]. I would think they'd also check for colitis too.

http://www.emedicinehealth.com/colitis/article_em.htm

Gosh - I hope you get some answers pretty soon. Getting your EnteroLabs tests may give some additional clues.

Keep at it!! Please keep us updated!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[darcijj]

Hi Aklap, Yes I saw a Neuro.. went through all the tests including MRI, EMG, B-12 and lupus.. said everything was normal.. could not find a neurological cause.. I have been reading on the B vitamins.. the other B vitamins can cause neurological type symptoms besides the B12... maybe I am deficient in one of those.. Don't doctors realize yet that test results can be wrong? Not everyone fits into the normal, not normal ranges.

My thyroid tests 7 years ago were normal.. but I found a doctor who diagnosed based on the symptoms not the test results.. One Doctor said to me.. "I treat the patient, not the test results".i.e. the symptoms. The thyroid medication made a dramatic positive result in my quality of life.. it was a complete 360 after a couple months.

I ordered the Entero Lab tests!

When I went gluten free for 2 weeks, by the end of the second week most of the neuro symptoms were gone. Just some slight twitching in my foot, barely noticeable.. can't wait to try it again. lol...

In the meantime I will get the Celiac blood panel this week.. and eat some gluten foods that I really like .. like a Subway Double Stacked Steak and Cheese sub on Italian Herb bread!

[The Edifying Conscience]

Al's right the colonscopy might be a good idea. Having said that a colonoscopy is NOT the test that is used to diagnose CD. One must have an endoscopy to determine if a person has CD or not. Needless to say you don't have to eat gluten for the colonscopy but you will for the endoscopy.

If I were you I would find a different physician...but that's just my $.02.

[yogaprof]

you mentioned "He also advised me to eat more fiber & bran and gave me metamucil samples... first ingredient is Wheat Flour! "

I thought metamucil was ok?

[ostrich]

Metamucil is owned by Proctor & Gamble. From their website:

[darcijj]

yes.. it was the wafer Metamucil.. Thing is I do not even need metamucil.. I do not have that much of a problem with constipation.. even when I do get it, it doesn't last long.. I have loose stools or bulky stools most of the time..

It just seems to me that if there is even a possibility it is Celiacs a doc would want to rule that out before advising someone to eat a high fiber, bran diet, and he specifically mentioned CEREAL and encouraging me to take a product whose first ingredient is wheat flour. If I had not done my research before hand and knew better I could have made myself sicker. He really didn't even listen when I told him my 2 weeks of being Gluten free worked and I felt so much better.

I am not going to wait the 2 months for him to do the colonoscopy and decide he might want to do the Celiac Biopsy.. that means I would have to keep glutening myself all that time..

I might still do the colonoscopy.. but after my bloodwork is done on Friday I am done with Gluten.. Entero labs indicates you do not need to be eating it for their tests.. I already ordered those.

I am not putting off feeling better any longer!

[aklap]

I would highly recommend doing the colo - for no other reason other than to look around. I was just scheduled for an EGD and the doc added a colo too. I said "as long as I'm out, you might as well have your way with me". He found a polyp and removed it. It was benign at this point. However, he did miss many [and I was told quite large] diverticulae.

Good luck in your quest for health!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]

[aklap]

Os, I maybe easy, but I'm NOT cheap!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]

I know, I know. One Chebe 'za, coming up!
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[nightangel73]

I hate when gastro doctors say it's IBS. It's like when they don't know what could be the cause of your symptoms it's IBS. I still have yet to find a smart gastro doctor. One time I was so sick of the stomach and they did testing and nothing was found. I end up finding a cure myself because nothing they gave me worked and I saw several gastro's. I was like god how come I know more than him? Geehz..

[Kanick]

Your story and symptoms are so similar to mine it's almost scary. I was just thinking the other day that I have lived in a brain fogged world almost my whole life. I've felt bad since I was a teenager and probably before. Cronic allergies, sinus problems, eczema, stomach issues etc. I've had every test run known to man and I usually get the triumphant, "It's IBS (or allergies or whatever) here are some pills. My body doesn't react well to most meds, so I usually have to discontinue them anyway. My favorite is, "I think your depressed here, have another pill"

I had to force my idiot doctor to run a blood test and she wouldn't give me any specifics on numbers or what test she ran. I just got another triumphant, "IT's definately not Celiac because this test would have said it was" I went the Enterolab route (which I know isn't definative) because I wasn't getting anywhere with her or the multiple other doctors who have run tests for lupus, RA, diabetes, thryoid function etc. etc. who have diagnosed and then undiagnosed me with a rare form of psoriasis and psoriatic arthritis.

Seems to be a fairly common story around these parts. Good luck to you.

[Luv2Dance]

Oh my goodness, this all sounds so similar to me. My GI told me I didn't have celiac based on two blood tests that he gave me, but my Enterolabs came back positive for gluten intolerance. My Enterolob score was 36, if I remember correctly.

I just now came back from seeing a new doc at my PCP's office. I went in for exhaustion and mental fog, and to see what tests they could run. I want to make sure I check everything and do the right thing, including to sticking to the gluten free/casein free diet. They are running a Thyroid panel, Lupus, checking for Mono, etc. When I mentioned the food allergies, she said she saw my GI had ran Cleiac tests and was going to get the results. I told her one of my doctors is pretty sure I have Celiac, but that GI doctor disagreed based off two tests he ran. Not the complete 5 that I see is for the full Celiac panel.

Anyway, I get my test results next week. Thankfully, this new doc didn't rule out the Celiac, told me to stick to the diet, and follow up with my other doctor that thinks I may have it. (Totally unlike the GI doc that just told me to start eating everything again.) It was encouraging to not be blown off. And I'm still okay to not have a formal diagnosis.

Interestingly, my friend sent me a web sight today where I was confirmed that another one of my symptoms is from Ceilac. http://gflinks.com/
You guys may already have this one. I found it helpful.

[Kanick]

I was reading one of the articles you just posted. I have those little mouth cankers/blisters chronically.

(sorry to hijack the thread, carry on)