*sigh* Went To The Gi, More Confused Than Ever

[Aphreal]

Since I've had this for so long (30 yrs) the likelyhood that it IS *just* IBS is very high. Because if it was something more severe, I would have been *moved* to seek medical care.

#1 in my early adulthood I was told to eat 'right' and I wouldnt suffer. (LIE)

#2 I just dealt with the pain because I didn't know better

#3 I didn't have insurance.

#4 Im here now.. hellllooooo

Thanks Doc.

I asked why my headaches, muscle aches and over all brain fog has been better since gluten free she said that many none GI ppl benefit from gluten free. I asked why I was still having gastro problems, but not as many. She said that it was more likely carbs and not gluten persey. She said carbs turn to sugar then turns to gas and aggrevated my IBS

WHAT is causing the IBS? "We really don't know"

Ok.. Why do I have a reaction to gluten (and large amts of corn) 30min after eating. She told me that everyone has the the physiological response in their gut to evacuate after eating. MINE was just on overdrive. but but but.. it doesn't happen every time I eat.

So... She drew blood, scheduled the colonoscopy and put me on an antispasmotic and a probiotic/fibre therapy plan.

She was really nice but to say I had IBS because that's what Ive always had and it never got bad enough to seek attention upset me. I suffered GREATLY because I couldnt afford to go to the dr. I bet this sounds familiar to some of you. I will see what the scope and bloodwork crops and go from there. She said she will take biopsy if something looks off. Howabout you take a biopsy and test it against allergens? That IS what I want really. right? grrrr

[ravenwoodglass]

Why isn't she doing an endoscopy at the same time as the colonoscopy? Sounds like she doesn't even want to consider celiac in my opinion.

[precious831]

Why isn't she doing an endoscopy at the same time as the colonoscopy? Sounds like she doesn't even want to consider celiac in my opinion.

I had endoscopy and the colonoscopy done at the same time.

[kareng]

She needs to do the endoscopy also. That looks at the top half. The colonoscopy looks at the large intestine. During the endoscopy, she should take many biopsies of the top part because you can have some healthy parts of the intestine and you want to catch the bad parts. The biopsy doesn't have anything to do with allergens. A pathologist will look at them under a special microscope. They will see damage to the intestine and that will show Celiac. The damage of Celiac can be hard to see by the GI during the procedure. It's mostly microscopic.

Go to www.celiacdisease.net. This is the Univ of Chicago Celiac Center. They have some easy to understand info and fact sheets.

[cassP]

did the doctor only schedule a colonoscopy because of your health insurance??

my Gi said (with my catastrophic insurance thru United)- that i was only allowed ONE procedure. i went with the colonoscopy just to rule out all the other serious illnesses because i was already familiar and ready for a gluten free diet regardless.

but later, as i am one of those who wanted an official diagnosis-> i regretted that i didnt fight United for BOTH procedures.

you may want to demand both.

[sandsurfgirl]

You are WAYYYYYY too new at this to have full benefit from the gluten free diet. Now that you are gluten free the tests are invalid anyway. You won't test positive on a gluten free diet.

It took me 6 months to rid myself of nearly all symptoms and feel really good. I still problems here and there even if I'm not glutened.

It takes awhile for the gut to heal.

I and many others on here do not believe in IBS. It's a junk diagnosis. It means "there is a problem and we don't know what it is so we'll call it IBS." ALL of us have been dx'd with IBS or most anyway. IBS is crap. There is a reason for all those symptoms.

If you are getting good results on the gluten free diet you need to give it time. Read old threads on here from newbies so you can see what others went through. You'll see that it takes time and you go through all sorts of phases during healing.

Many if not MOST or maybe all of us have other intolerances due to gut destruction. So it could be other things bugging you.

If you want valid tests you must eat a ton of gluten. Personally I would never do that. I would just go gluten free and call myself celiac but that's me.

I don't think your doc is knowledgable like so many GI docs. It's typical sad to say.

I had a GI doc tell me all that IBS crap and lactose intolerance and we dont know what's wrong. Even talked me out of celiac testing because he was SURE I did not have celaic. 7 years later after multiple ER trips and being debilitated I came up positive for celiac on blood tests.

[gf-soph]

Oh, IBS. Any time a dr brings out that gem, I know I'm not getting anything from them. If you are being kind, at best IBS is a description, not a diagnosis. It doesn't help you get anywhere.

Overall, it's good to get the colonoscopy done to rule out anything nasty, but you are missing a lot of info if they don't do the endoscopy too. There is no point biopsying for celiac now as you will get a false negative anyway, but it could at least tell you if you have an ulcer or some physical cause.

There is value to ruling out some of the other diagnoses, but I can see how the attitude you got is pretty disheartening. I saw a gastro a few months back who took me really seriously due to my cronic low iron and b12 and lots of symptoms, he suspected crohns etc. He at least took biopsies looking at the enzyme production in the gut (disaccarides) and looked for possible parasites etc. He also said that if nothing came up on endo/colonoscopy we would do the pill cam.

When I came in for follow up, everything was normal (except a polyp, but that was unrelated to symptoms, but I was very lucky to have that found!) and you could see his attitude had changed SO much. He pretty much said IBS, try a low dose antidepressant to help with the serotinin in the gut. I asked about the pill cam and his previous comments, and he said medicare wouldn't cover it. It's like he treated me as 2 different people. I was profoundly disappointed.

Sorry, long answer, but I tihnk i know how you feel.

On the plus side, I have had amazing results from a recent elimination diet. I sepnd 4 days this week feeling TOTALLY NORMAL, gi was working normally, no major brain fog, even my sense of humour had improved. It's been hard work, but I know that I will be able to manage it now. My gp has been more imporant than anyone, and my dietician has been pretty good. I've had a number of hopeless specialists, if you don't tick their exact boxes, most aren't interested.

I hope you at least get some useful answers out it it

[cassP]

i agree with above posters about IBS, and just wanted to add- that just the fact that docs use the term: "Idiopathic" is proof that they still dont know so much! they're not trained to correlate illness with diet at all...

the more i learn about our genes & our diet & our environment- the more it seems there really is no mystery at all

[GFinDC]

The endoscopy is probably not going to show much at this point, since you have been gluten-free since early July. Same with the blood antibody tests, they are not any good if you aren't eating gluten full time for quite a while before the blood draw. Months. So if you are thinking of testing to diagnose celiac you are basically too late to do that. Unless you do go back on gluten for several months and then it is not a 100% guaranteed accurate test result even then.

Here's some reference on the villi for your pleasure reading.

Open Original Shared Link

[MissyJoy]

I have to agree about the stupidity of the IBS diagnosis. Over 20 years ago, I began seeking help for all of my intestinal symptoms, and doctors - 2 OB/Gyns, 3-4 General Practitioners, and 2 GI Specialists - all said the same thing. "It's IBS, so eat more fiber." But not one of them had any suggestions for me when I was eating a perfect diet of fiber and it didn't help at all. As a matter of fact, I kept getting worse the more fiber I ate. So I do believe that when a doctor says "It's IBS" what they're really saying is "I don't have a clue what your problem is but run along and do the best you can."

Thanks to the internet and sites like this one, I figured it out myself and went gluten free. I've been improving ever since! Doctors.....

[sandsurfgirl]

Drug companies sponsor seminars and training for doctors. They can't or won't find a drug for celiac. There is a drug for IBS. Hence the prevalence of it's diagnosis.

I get really ticked off when people go to their doctors after a few weeks on the diet with great improvements but because it's not completely resolved they doubt the need for the gluten free diet, or doubt it's celiac or whatever.

Such total ignorance on those doctor's parts. Just about nobody on this board has been completely free of symptoms after only one month. And honestly many or maybe most of us always have some sort of symptom or other that crops up here and there.

Commonly I read 4 months, 6 months or even longer. Some people one year. Some people never completely recovered from gluten damage but they are a heck of a lot better than before.

[mushroom]

Let me add my two cents worth here

Thirty-five years worth of IBS and fibromyalgia diagnoses (until my psoriatic arthritis, that is, and it's still not related to diet!!! Two and a half years down the gluten free path, with many food intolerance milestones along the way, me telling the docs what I have, what deficiencies to test for, what and when to prescribe for me (I know so much more about it than any of them ) and still I am not right - electrolytes way out of whack and I just this week consulted a nutritionist, who said she didn't know how I was still walking around

I am waiting for her written report and a workbook she is sending me (hope it comes today), but in the meantime have ordered and received from Kentucky some special probiotics which have 450 trillion! organisms of seven different strains which I am to take every day (no this lady is not a crank, she is a very well respected researcher, wrote a book on Vitamin D3 and a famous document "The Lectin Report" - www.krispin.com).

You have, my sweet impatient one, embarked on a journey which is going to take a while and quite a bit of work, so do not be impatient, impulsive, impetuous . Just work it through {{{{{Hugs}}}}}

[cassP]

(until my psoriatic arthritis,

question- is Psoriatic Arthritis another one of these illnesses that is common in Celiacs or people with Gluten Intolerance??? i'm curious

[mushroom]

question- is Psoriatic Arthritis another one of these illnesses that is common in Celiacs or people with Gluten Intolerance??? i'm curious

Yes, it is an autoimmune disease associated with celiac - both the psoriasis part and the rheumatoid arthritis part, I just got them both together although the RA is seronegative.

[missceliac2010]

Howabout you take a biopsy and test it against allergens? That IS what I want really. right? grrrr

I'm with the rest. If you're going to prep for a colon, then go for the upper GI as well. Personally though, I fear that all tests might show up negative with you being gluten-free already. It happened to me. I was in the hospital sick as a dog and deemed "nothing by mouth" (NPO) and fed liquid nutrients and glucose through my IV. Just those 3 days was enough to cause false negatives/borderline results.

I'd get a second opinion. Heck, I'd forget the tests and just roll with gluten-free. I get anxiety the minute I walk into a hospital, and the prep for the colon... not fun. But good luck and I wish you clarity and guidance to make the right decision for yourself!

[Aphreal]

Ahhhh Mushroom has it. I Am impatient. I want it fixed now. I am working on that.

I am going with the scope. I have other bowel issues unrelated and I should have had a scope ages ago. My mother had a cow when she heard it had been 22 years. (I have a rectocele and bleeing sometimes, Polyps, diverticulis, pockets and the like all run in the family.

The funny thing is... I told her my symptoms and longevity of my symptoms before I even brought up my previous IBS dx. Who CARES if I've had it for most my life. Still means something is inflamming my bowel. yea, looking back she did jump on it.

Anyway, I do not like this trial error crap but... I am going to roll with it. When I first went gluten-free I did not eat grains because I did not know how. I felt wonderful. Then went nuts with the gluten-free bread stuff. Starting feeling like junk so... the carb/sugar/gas rollercoaster must have some merit for me.

I will do my best to find a happy medium. Not all carbs do this to me. Perhaps I just need to find the right flour. I seem to not have any problems with rice flour.

but corn bothers me and I have discovered too much of any one flour at a time will get me. so... moderation and the right flour. yes that is my next quest.

Thank you guys for not only listening.. but for being real. I wanted her to be the *one* but it sounds like she is just one in the melting pot.

Insurance pays for labs so no harm in the sprue panel though I expect nothing. I paid the ded and there is a heafty cancel fee on the scope but I think it purdent to have it done anyway so I will move forward and see where it leads.

Why do Dr's not listen to their patients? I only found one that really REALLY ever did. My GYN. I even have her listed as my PCP. Love her to death!

[GFinDC]

...

Anyway, I do not like this trial error crap but... I am going to roll with it. When I first went gluten-free I did not eat grains because I did not know how. I felt wonderful. Then went nuts with the gluten-free bread stuff. Starting feeling like junk so... the carb/sugar/gas rollercoaster must have some merit for me.

...

I want to suggest you take a look at the ingredients for those gluten-free breads etc you were eating when you started feeling bad and write them down for future reference. It could be there are ingredients in there that you are reacting too, and it could help to have list of possible suspects on-hand later.