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Just Went To The Doctor

4tomorrow

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4tomorrow Apprentice
4tomorrow
Posted

Well I got the "Biopsy is the gold standard" speech. She said she saw flattening but that my biopsy looked "pretty good". I don't know if I am gluten sensitive or what. Maybe be it is IBS, I just know that I followed the Heather Vanvorous IBS diet and I still felt sick. I'm sending out for my enterolab kit today, I'm going to do the full panel thing. So I'll let everyone know about my results.

Btw, I mentioned to her about Enterolab and she got very snippy. She said that stool is NOT the way to find celiac. At which point I asked her that after my bloodwork and biopsy if she can 100% say that I don't have it and she said "NO". I feel like I deserve a 100% percent answer.

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jenvan Collaborator
jenvan
Posted

Hopefully that full panel will give you some answers. What did the doc mean by 'pretty good'? That your biopsy was "pretty normal" or that it was pretty close to Celiac?

4tomorrow Apprentice
4tomorrow
Posted
  • Author

I have no idea. I would have thought that with her seeing flattening that she would at least tell me to try the gluten-free diet. She just said pretty good. That's when I brought up Enterolab, and she seemed to want me out of there then.

slpinsd Contributor
slpinsd
Posted

4tomorrow:

You sound like you are in the same position as I am! After my endoscopy, the doc said that she saw "mild flattening of the villli", and that it was mild, so I definitely didn't have "really bad Celiac", but my biopsy came back with no damage noted. It seems like it should be the other way around, since the changes are microscopic. So I'm kind of up in the air about the whole thing. I do know however, that I am gluten sensitive, and that I have had positive results with the diet. Have you gone gluten-free yet? The good thing I guess is that you can be recently gluten-free with Enterolab. I think? I, too, ordered the genetic and stool testing from Enterolab. I haven't told my doctor, because I would expect the same response. In fact, the nurse faxed me the biopsy results and said that everything is normal and I don't have to come in for another appointment, so I haven't even talked to her.

That's weird that if she saw flattening, she didn't tell you to go gluten-free. Mine told me to go "low gluten" after the biopsy.

Also, did you get a copy of your biopsy report? You must get this. Then let us know what it says. Sometimes there are more minor changes that could be the beginniing stages of Celiac.

PS Where are you from? Maybe we have the same doctor..... :)

jenvan Collaborator
jenvan
Posted

Can I just say the whole 'low gluten' thing drives me crazy! Glad you two are thinking things through on your own. 4tommorrow-let us know what enterolab comes up with. If I had any flattening, I would go full-on gluten-free. Unfortunately as doctors are beginning to recognize Celiac/gluten intolerance--they often do not diagnosis those w/o the 'classic' symptoms, who need the gluten-free diet.

4tomorrow Apprentice
4tomorrow
Posted
  • Author

I have also had a postive ANA for about the past three years and they can't find the cause. They ruled out lupus and other "obvious" things so who knows.

I just talked to the nurse and I can pick up my labs on Monday, so I'll post them then.

I'm in Ohio. :)

slpinsd Contributor
slpinsd
Posted

hey jen!

how do you think that docs can see mild flattening, and then the biopsy is negative. do you think that they only think they see it because they are looking for it, or do you think that somehow the area they clipped (And you'd think it would be the part that looks flat) didn't have visible damage? Or possibly the pathologist isn't recognizing minimal changes?

kristen :)

your positive ANA definitely could be from gluten sens/celiac disease. I also have adrenal problems (I'm getting tested tomorrow for possible Addison's disease), which i believe are induced by GS/celiac disease.

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jenvan Collaborator
jenvan
Posted

kristin-- (hi!)

that is also SUCH a good question! i wish i knew. perhaps they did not really see flattening. perhaps the flattening was very slight and the biposy did not show an increase in lymphocytes in the tissue. The latter would make no sense to me though, b/c if there was any flattening, I would think lymphocytes would be increased... ? I guess it is possible that a biopsy was taken which gave inaccurate results. I assume they took more than one biopsy 4tommorrow? Or maybe the evidence is there, but the doctor is reading them otherwise. 4tom--Do you have a copy of your biopsy report/results?

slpinsd Contributor
slpinsd
Posted
perhaps the flattening was very slight and the biposy did not show an increase in lymphocytes in the tissue. The latter would make no sense to me though, b/c if there was any flattening, I would think lymphocytes would be increased... ?

Are there normally lymphocytes and plasma cells present in the lamina propria?

elonwy Enthusiast
elonwy
Posted

I had a vaguely similar experience. I was positive for antibodies on the blood test, and my biospy showed "no gross evidence of sprue" whatever that means, but I went gluten-free the day after the biopsy and had such a positive reaction to the diet that he diagnosed me with Celiac on the basis of my blood test and "dietary challenge". Technically it was only half a challenge, but since I've accidentally "challenged" the diagnosis here and there, we're all convinced.

Its amazing how much doctors don't believe that WE don't know whats going on with OUR OWN bodies.

grrrrr.

Elonwy

Jen H Contributor
Jen H
Posted

Hey 4Tomorrow,

I have a positive ANA as well and was referred to a rheumatologist. The doctor told me that ANA tests can be positive for various reasons. It could be because of an infection you're fighting or some type of auto-immune disorder that you may have. I have various autoimmune disorders, celiac being one of them, and the doc told me that I may have a positive ANA for a while. When you're body's not as stressed the ANA may go negative again.

rma451 Newbie
rma451
Posted

how do you do low gluten??

eat just half a sandwich?? half a pizza , I know every other day ,lol?

to me that is like saying just drink part of this poison, and you will be only half as sick . ????

why cant these doctors and medical personal get with the program, more and more people are having dietary problems starting younger .

our food sources and water are being contaminated with pesticides and chemicals . we seem to be on our own with celiac . It takes years to find due to all the diffrent symtoms and then throw the inability of doctors to reconize them , it becomes a long road of illness and fustration.

I didnt mean for this to be a rant but \\\

I find most of the time we have to listen to our bodies and just help ourselves .

good luck and I hope you get some answers .

This diet??? hate that word is doable and well worth the extra time it takes to be well again.

rosie

jenvan Collaborator
jenvan
Posted

Kristin- Yes, there is....

Read below for more info if you like on lamina propria.

Lamina propria is loose connective tissue in a mucosa. Lamina propria supports the delicate mucosal epithelium, allows the epithelium to move freely with respect to deeper structures, and provides for immune defense. Compared to other loose connective tissue, lamina propria is relatively cellular. It has been called "connective tissue with lymphatic tendencies". (Examples of lamina propria.)

Because mucosal epithelium is relatively delicate and vulnerable (i.e., rather easily breached by potential invading microorganisms, compared to epidermis), lamina propria contains numerous cells with immune function to provide an effective secondary line of defense.

At scattered sites along the tract, lamina propria may be heavily infiltrated with lymphocytes and may include lymph nodules (i.e., germinal centers where lymphocytes proliferate). Such sites are especially characteristic of tonsils, Peyer's patches (in ileum), and appendix, but may occur anywhere.

Accumulations of lymphoid tissue may be reminiscent of inflammation (e.g., the mucosa of a chronically inflamed colon may resemble that of a normal appendix).

Lamina propria contains most of the elements of ordinary connective tissue.

Lamina propria is generally not as fibrous as the deeper connective tissue of submucosa.

Lamina propria has a relatively high proportion of lymphocytes and other immune cells.

Lamina propria has practically no fat cells.

Lamina propria includes a rich bed of capillaries. In the small intestine, lamina propria of villi includes lacteals (lymphatic capillaries).

Lamina propria of intestinal villi may include smooth muscle fibers.

In the oral cavity and esophagus, lamina propria is located immediately beneath a stratified squamous epithelium. Lamina propria beneath such a protective epithelium is usually less cellular (fewer lymphocytes) than elsewhere.

Where the mucosal epithelium is extensively evaginated (e.g., intestinal villi) or invaginated ( intestinal crypts), the location of lamina propria "beneath" the epithelium amounts to filling-in between nearby epithelial surfaces (i.e., surrounding each crypt, within each villus).

Where epithelial invaginations are densely packed (e.g., gastric glands of stomach), lamina propria can be relatively inconspicuous.

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