So Frustrated

[niese]

Went to new GI doc today and here is what he said. The old GI doc read the biopsy incorrectly. In order to have Celiac need 2 things to show up on biopsy and I forget what they are,  I only have 1 of them plus the old doc ordered the wrong Celiac blood work. So the new doc is ordering my slides from my biopsy to read them himself and he had me do the correct Celiac blood work today plus other blood work as well. He said he was not ruling out Celiac nor saying that I have it until he reads my slides and sees the results of the correct blood work. He said there are 10 different illnesses that look like Celiac. New doc said for me to eat a little gluten and see how my body reacts. Well I had REAL bread today for the first time in 4 months, oh it was so yummy, wasn't cardboard like gluten free is. So far no reaction thank God. Can't wait to test out pizza oh I miss pizza. I also had an X ray of my stomach today and he changed my meds. If the test today shows I don't have Celiac, I could be gluten sensitive and the test for that is I go into the doc's office and eat 2 muffins. One has gluten the other is gluten free. I eat one and I have no idea if its gluten free or gluten. I then wait and see how my body reacts after awhile I eat the other one still not knowing if it is gluten or gluten free. If I react to the gluten muffin then I have gluten sensitivity, I am praying its not Celiac nor gluten sensitive cause the diet is very depressing and super expensive. So today we are starting all over again and trying to figure out what is causing my issues. Oh gee this is so not fun. I just want the chronic diarrhea to be gone and have my life back. 4 1/2 months of this is long enough! I have to be honest, I am a little upset with the old GI doc. If he didn't have enough knowledge with Celiac he should of been honest and said it looks like Celiac but I am going to send you to a doc that specializes in Celiac. I would rather had him be honest then play a guessing game with my health. It's a little depressing starting over but thank God this new doc appears to know what he is talking about, he is a Celiac Specialist.

[kareng]

Have you been eating gluten free along? Because then the blood tests would probably be negative.

[niese]

No I was totally gluten at the time of all test

[1desperateladysaved]

Sorry...I hope you will feel better soon and have some definitive answers.

 

D

[niese]

Thanks,  I am staying gluten free until I get my results not worth the risk of causing more damage.  Just so frustrated that doctors can't be honest if they aren't educated in Celiac.  This new doc is suppose to be a Celiac Specialist so I just hope and pray he is and can figure out what is causing this Chronic D, bloating, fatigue and mild abdominal pain.  I have the symptoms of Celiac or gluten sensitivity but he said the biopsy and blood work doesn't show evidence that I have Celiac.  So I just pray these new test he ordered gives the results of my issue.  I just want to feel better and I have been gluten free for the past 4 months and no real changes. (I was totally gluten at the time of the biopsy and other blood work.)  So frustrated and confused! 

[nvsmom]

Be careful about discounting celiac tests unless he finds something else that could account for positive results. I would hate for you to suffer more years of discomfort just because the "stars and moons" didn't perfectly align for a clear cut diagnosis. KWIM?

 

Good luck. 

[niese]

Be careful about discounting celiac tests unless he finds something else that could account for positive results. I would hate for you to suffer more years of discomfort just because the "stars and moons" didn't perfectly align for a clear cut diagnosis. KWIM?

 

Good luck. 

I hear that, He ran different blood work for Celiac he said my old doc ran the old test so staying gluten free until I have positive results and even if he says I don't have Celiac prob will still remain gluten free just feel its better for my body.  BTW is does KWIM mean? 

[mommy2krj]

I have to say....I'm a bit confused. In one post you said that the new GI ran new Celiac tests. Then someone asked if you have been eating gluten so that these tests come back with the correct response....you said you've been eating gluten for all the tests. Then in the next post I see by you, you say you're going to be staying gluten free until you get these new test results because you don't want to do any more damage. If you have been gluten free for a while....you need to do a "gluten challenge" and be eating gluten for a while (not sure exactly the time frame) so that any new tests that are run come back with correct results as being gluten free with skew those results.

If you were in fact still eating gluten and hadn't gone gluten free yet, then you should be good as far as that goes. Just don't want your new tests to come back wrong.

 

So far as I'm aware, with the biopsy they are only looking for 1 thing...flattened villi. So, I'm not sure what 2 things this GI thinks they are supposed to find.

 

Hugs. Either way, I hope you get some answers.

 

The diet can be difficult....and I think it is more difficult for people that don't cook a lot or that didn't eat a wide variety to begin with. Our biggest issues have been those things they sneak gluten into. Things that if I made them from scratch at home wouldn't have gluten in them, so why do the store bought ones?! Those get me. We went gluten free as a household when my 6 year old was diagnosed. The first couple of weeks were a struggle but now we're getting the hang of things. But....I was already doing more whole foods and making things mostly from scratch. This has just made it more important.

[nvsmom]

He ran different blood work for Celiac he said my old doc ran the old test so staying gluten free until I have positive results and even if he says I don't have Celiac prob will still remain gluten free just feel its better for my body.  BTW is does KWIM mean? 

 

As long as the doctor realizes that "old test" doesn't always mean "bad test" then he'll probably set you up right. You might want to get copies of all tests that get done just so you can do your own research and come to your own educated conclusions... not all doctors are created equal, and there is always a chance that you've got a dud.  LOL

 

KWIM is "know what I mean".... I get lazy with my typing some days.

[niese]

As long as the doctor realizes that "old test" doesn't always mean "bad test" then he'll probably set you up right. You might want to get copies of all tests that get done just so you can do your own research and come to your own educated conclusions... not all doctors are created equal, and there is always a chance that you've got a dud.  LOL

 

KWIM is "know what I mean".... I get lazy with my typing some days.

Yes I have the copies of all test results.  

[niese]

I have to say....I'm a bit confused. In one post you said that the new GI ran new Celiac tests. Then someone asked if you have been eating gluten so that these tests come back with the correct response....you said you've been eating gluten for all the tests. Then in the next post I see by you, you say you're going to be staying gluten free until you get these new test results because you don't want to do any more damage. If you have been gluten free for a while....you need to do a "gluten challenge" and be eating gluten for a while (not sure exactly the time frame) so that any new tests that are run come back with correct results as being gluten free with skew those results.

If you were in fact still eating gluten and hadn't gone gluten free yet, then you should be good as far as that goes. Just don't want your new tests to come back wrong.

 

So far as I'm aware, with the biopsy they are only looking for 1 thing...flattened villi. So, I'm not sure what 2 things this GI thinks they are supposed to find.

 

Hugs. Either way, I hope you get some answers.

 

The diet can be difficult....and I think it is more difficult for people that don't cook a lot or that didn't eat a wide variety to begin with. Our biggest issues have been those things they sneak gluten into. Things that if I made them from scratch at home wouldn't have gluten in them, so why do the store bought ones?! Those get me. We went gluten free as a household when my 6 year old was diagnosed. The first couple of weeks were a struggle but now we're getting the hang of things. But....I was already doing more whole foods and making things mostly from scratch. This has just made it more important.

I am sorry for the confusion I meant when I had the biopsy and first set of blood work I was eating gluten at that time. I knew nothing about Celiac disease.  After those results my old GI doc said I had Celiac must go gluten free see you in 6 wks.  He didn't explain the disease even when I said I didn't understand  he just sent me on my way.  That should of sent up red flags but I was numb from the results so when I got home I hit the internet to learn all I could about this disease. All the old GI dr wanted to do was keep me on steroids so I searched for a new GI dr that specializes in Celiac. The one thing the new dr said that is needed in biopsy is flattened villi which I have,sorry I can't make out his writing to tell you what the other is.   I am just so confused by it all. I asked about the flattened villi and his response was anyone with diarrhea will have flattened villi doesn't mean its Celiac, I just scratched my head on that one.  From my first blood work I was in the normal range for IgA Serum and  tTg IgA Antibody but Gliadin Antibody IgG was high, and Endomysial Ab IgA says negative and Reticulin IgA says negative.  New GI doc said this was the old Celiac Panel and not enough evidence its Celiac.  I have no clue just saying what this doc said.  Not saying I agree with him or not, I am not educated in all this so I am clueless.  I told him I have been gluten free for 4 months and asked if the test he will be running will I need to eat gluten first and he said no.  Clueless again since I thought gluten needed to be in my system.  I know one of the test is to see if I have the gene.   I do remember Vit B12, Frolic Acid, and a few other blood test but I can't remember what they were, as well as a stool test.  Sorry for all the confusion but right now my head is spinning.   the new doc is ordering my slides from the biopsy to read them himself guess that is a good thing.  I just don't know what to think about all this.  But I do know 4 1/2 months of chronic "D" is taking its toll on me and I would like same answers.  Even after going gluten free it hasn't stopped as a matter of fact it has gotten worse over the past 3 wks and I know it wasn't from gluten nor CC.  I prepare my own meals and am very safe.  The only gluten I had in the past 4 months is the bread I had yesterday.  I do know I am remaining gluten free and just waiting for these results and praying the "D" STOPS!!!!!!! 

[niese]

Yes I have the copies of all test results.  

 

As long as the doctor realizes that "old test" doesn't always mean "bad test" then he'll probably set you up right. You might want to get copies of all tests that get done just so you can do your own research and come to your own educated conclusions... not all doctors are created equal, and there is always a chance that you've got a dud.  LOL

 

KWIM is "know what I mean".... I get lazy with my typing some days.

Yes he did say it wasn't a bad blood test just not the best test, said it was the old Celiac Panel. 

[nvsmom]

The anti-gliadin antibody tests (AGA IgA and AGA IgG) do not test for villi damage being attempted by the body like the tTG, DGP, and EMA tests do. The AGA tests for gliadin (gluten) intolerance and is thought by some doctors to work for both celiac disease and NCGI, although this is not widely accepted (yet). Perhaps the new GI meant that a positive AGA could be due to celiac disease or NCGI?

 

This report has more info on the tests on pages 10-12: Open Original Shared Link

 

The reticulin  tests are old and rarely used anymore, but I don't know the reasoning behind that.

 

Hope you feel better soon. Down with "D"!  

[niese]

The anti-gliadin antibody tests (AGA IgA and AGA IgG) do not test for villi damage being attempted by the body like the tTG, DGP, and EMA tests do. The AGA tests for gliadin (gluten) intolerance and is thought by some doctors to work for both celiac disease and NCGI, although this is not widely accepted (yet). Perhaps the new GI meant that a positive AGA could be due to celiac disease or NCGI?

 

This report has more info on the tests on pages 10-12: Open Original Shared Link

 

The reticulin  tests are old and rarely used anymore, but I don't know the reasoning behind that.

 

Hope you feel better soon. Down with "D"!  

THe  old doc did the AGA IgA and AGA IgG plus the biopsy which states small bowel mucosa with increased intraepithelial lymphocytes also states clinical and serological correlation for celias sprue are recommended.  States I also have Chronic ileitis (which I don't understand what ileitis is) and lymphocytic colitis.  New GI states this is not enough evidence to say I do or don't have Celiac.  All I know is I am totally confused and my head is spinning.  

[ravenwoodglass]

If you have been gluten free and your new GI thinks that won't affect the testing you have a doctor who does not know much about celiac.

Also  just because you don't feel ill right after eating a gluten item doesn't mean you are not reacting. Celiac reactions can be delayed so it sounds like your doctor is thinking more allergy with his 'muffin test'.

If you really doubt the first doctors diagnosis then go back on gluten for a couple of months at least and then get retested. That is if your body hasn't given you the answer after a couple weeks.

[nvsmom]

Also  just because you don't feel ill right after eating a gluten item doesn't mean you are not reacting. Celiac reactions can be delayed so it sounds like your doctor is thinking more allergy with his 'muffin test'.

If you really doubt the first doctors diagnosis then go back on gluten for a couple of months at least and then get retested. That is if your body hasn't given you the answer after a couple weeks.

 

I agree. I don't react immediately every single time I was glutened, but the severity of my symptoms do grow with time (repeated glutening).

 

From what I know of biopsies (and I'm not the most knowledgable) you have autoimmune cells moving into your villi. I think it would be rated as a Marsh I or II. Most doctors won't diagnose celiac disease until a patient hits Marsh III. So basically you have early damage but he won't diagnose you until you are more damaged... it's a broken system.

 

You also have a positive test (AGA) that shows gliadin sensitivity... Gluten sensitivity and the beginnings of villi damage... all I can say is that I'm glad you plan on staying gluten-free in spite of what the doctor says.  LOL

[mommy2krj]

I am sorry for the confusion I meant when I had the biopsy and first set of blood work I was eating gluten at that time. I knew nothing about Celiac disease.  After those results my old GI doc said I had Celiac must go gluten free see you in 6 wks.  He didn't explain the disease even when I said I didn't understand  he just sent me on my way.  That should of sent up red flags but I was numb from the results so when I got home I hit the internet to learn all I could about this disease. All the old GI dr wanted to do was keep me on steroids so I searched for a new GI dr that specializes in Celiac. The one thing the new dr said that is needed in biopsy is flattened villi which I have,sorry I can't make out his writing to tell you what the other is.   I am just so confused by it all. I asked about the flattened villi and his response was anyone with diarrhea will have flattened villi doesn't mean its Celiac, I just scratched my head on that one.  From my first blood work I was in the normal range for IgA Serum and  tTg IgA Antibody but Gliadin Antibody IgG was high, and Endomysial Ab IgA says negative and Reticulin IgA says negative.  New GI doc said this was the old Celiac Panel and not enough evidence its Celiac.  I have no clue just saying what this doc said.  Not saying I agree with him or not, I am not educated in all this so I am clueless.  I told him I have been gluten free for 4 months and asked if the test he will be running will I need to eat gluten first and he said no.  Clueless again since I thought gluten needed to be in my system.  I know one of the test is to see if I have the gene.   I do remember Vit B12, Frolic Acid, and a few other blood test but I can't remember what they were, as well as a stool test.  Sorry for all the confusion but right now my head is spinning.   the new doc is ordering my slides from the biopsy to read them himself guess that is a good thing.  I just don't know what to think about all this.  But I do know 4 1/2 months of chronic "D" is taking its toll on me and I would like same answers.  Even after going gluten free it hasn't stopped as a matter of fact it has gotten worse over the past 3 wks and I know it wasn't from gluten nor CC.  I prepare my own meals and am very safe.  The only gluten I had in the past 4 months is the bread I had yesterday.  I do know I am remaining gluten free and just waiting for these results and praying the "D" STOPS!!!!!!! 

 

Hugs hon! Thanks for clearing that up. I know what you mean about being overwhelmed. I know I was when my son was diagnosed!

I've never heard the "anyone who has diarrhea will have flattened villi" line before. Huh.

 

I'm going to assume that the other blood work your new GI ordered is to test vitamin levels and such and the genetic testing which doesn't need you to be eating gluten. That makes more sense.

Have you eliminated dairy? A lot of people that are Celiac or NCGS also are lactose intolerant and need to cut dairy as well. I'm beginning to wonder if I need to cut dairy for my little guy as his stomach issues haven't completely cleared up yet. They've gotten better but we're not quite there yet. And I know it's only been a little while in the grand scope of things but he didn't have much damage and barely tested positive so I'm thinking we caught his before the heavy hitting really started.

 

Hugs to you! I hope you can get it all figured out. Feel free to ask lots of questions here. Everyone is always trying to help!

[niese]

Hugs hon! Thanks for clearing that up. I know what you mean about being overwhelmed. I know I was when my son was diagnosed!

I've never heard the "anyone who has diarrhea will have flattened villi" line before. Huh.

 

I'm going to assume that the other blood work your new GI ordered is to test vitamin levels and such and the genetic testing which doesn't need you to be eating gluten. That makes more sense.

Have you eliminated dairy? A lot of people that are Celiac or NCGS also are lactose intolerant and need to cut dairy as well. I'm beginning to wonder if I need to cut dairy for my little guy as his stomach issues haven't completely cleared up yet. They've gotten better but we're not quite there yet. And I know it's only been a little while in the grand scope of things but he didn't have much damage and barely tested positive so I'm thinking we caught his before the heavy hitting really started.

 

Hugs to you! I hope you can get it all figured out. Feel free to ask lots of questions here. Everyone is always trying to help!

Yes I cut dairy out when I went gluten free 4 months ago.  Yeah I never heard that statement either that anyone who has diarrhea will have flattened villi.  Sometimes I wonder about these docs.  Blood work is for Vit B12, Folic Acid, and 2 others for inflammation. He is waiting to read my slides from my biopsy before doing any more blood work.  He changed my colitis meds, thank God I have insurance cause for 1 month supply cost $1333 no that is not a typo.  I only had to pay $1 co pay  I am still researching his statement that 2 things are needed in biopsy to confirm celiac, not having any luck there, so not sure what he is talking about.  When I call for my blood work results I will ask. 

[niese]

I agree. I don't react immediately every single time I was glutened, but the severity of my symptoms do grow with time (repeated glutening).

 

From what I know of biopsies (and I'm not the most knowledgable) you have autoimmune cells moving into your villi. I think it would be rated as a Marsh I or II. Most doctors won't diagnose celiac disease until a patient hits Marsh III. So basically you have early damage but he won't diagnose you until you are more damaged... it's a broken system.

 

You also have a positive test (AGA) that shows gliadin sensitivity... Gluten sensitivity and the beginnings of villi damage... all I can say is that I'm glad you plan on staying gluten-free in spite of what the doctor says.  LOL

From what I understand I have Marsh 1 and what he is saying is that doesn't mean I have Celiac there are other diseases that show this as well. He said there were 10 but only told me about IBS.  At this point he is not saying I do or don't have Celiac.  So he ordered my slides from the biopsy and is going to read them himself then go from there.  He did order some blood work Vit B12, Folic Acid and 2 others for inflammation plus a stool test. So I am remaining on gluten free diet and waiting for these results.  Keeping a food journal as well.  He does believe I have food intolerance which he will address once these test results come back.   Some of the things he said make me scratch my head.  

[mommy2krj]

Hmmm...I've never heard the Marsh thing either....not that that means anything. We're very new to all of this ourselves. My best friend had Crohn's and Ulcerative Colitis. Those meds are INSANELY priced! I remember her telling me how much her medication cost...and she would tell me per pill per day. Crazy.

 

I hope you do get some answers. Sometimes doctors make me just want to smack them upside the head....wait, who am I kidding....MOST of the time they make me feel that way!

[1desperateladysaved]

I remembered that once when I had blood drawn they took extra so I could add more tests later if I chose.  I am just wondering if they may have saved samples from your original tests.  I am wondering if it would be well to always ask for extra to be drawn when one is about to go gluten free.  It is certainly worth asking if anyone is asked to do further testing once they are gluten free.  The sample drawn before going gluten free would seem more likely to yield accurate tests and spare one from a gluten challenge.

[Celeste77]

I agree with the person who mentioned the genetic testing; would be the only tests that won't be influenced by your current gluten-free diet. I have to say that the muffin challenge is the worst idea ever and a HUGE red flag to me. My jaw is still on the floor. It is not possible to draw a definitive or measurable conclusion from simply eating a muffin, gluten free or not. Many Celiac do not have instant reactions or obvious reactions but this does NOT mean damage isn't being done. And if there is even a chance you truly are Celiac, no doctor in his right mind would give you poison just to watch and see what happens!! This is not okay as with celiac disease what you don't see can seriously hurt you, especially when if you are one who lacks instant reactions. Also, have you been tested for small intestine bacterial overgrowth? I was still sick after diagnosis, after being gluten free for 5 months. I went back to the GI many times and finally insisted on getting a hydrogen breath test which lead to the bacterial overgrowth diagnosis (common in the newly diagnosed who do not improve with gluten-free diet) treatable with specific type of antibiotics and then heavy doses of probiotics.

 

I truly understand your frustration. But the only thing worse than being told you ARE Celiac when you're NOT, is being told you're NOT when you ARE. The latter is a mistake that can rob you of your health, life, relationships, memories, career and eventually you end up on your death bed wondering how you got so sick. It happened to me so please check this doctor's credentials. I never had diarrhea or weight loss or "typical" symptoms of Celiac disease.  I would have passed the muffin test.

 

Check into one of the university hospitals that specialize in Celiac research and diagnosis. Mayo Clinic, University of Chicago, and there is one in Boston as well. Or perhaps a local university hospital near you with a reputable GI division.

I wish you the best & don't give up until you get a proper diagnosis! 

[niese]

I agree with the person who mentioned the genetic testing; would be the only tests that won't be influenced by your current gluten-free diet. I have to say that the muffin challenge is the worst idea ever and a HUGE red flag to me. My jaw is still on the floor. It is not possible to draw a definitive or measurable conclusion from simply eating a muffin, gluten free or not. Many Celiac do not have instant reactions or obvious reactions but this does NOT mean damage isn't being done. And if there is even a chance you truly are Celiac, no doctor in his right mind would give you poison just to watch and see what happens!! This is not okay as with celiac disease what you don't see can seriously hurt you, especially when if you are one who lacks instant reactions. Also, have you been tested for small intestine bacterial overgrowth? I was still sick after diagnosis, after being gluten free for 5 months. I went back to the GI many times and finally insisted on getting a hydrogen breath test which lead to the bacterial overgrowth diagnosis (common in the newly diagnosed who do not improve with gluten-free diet) treatable with specific type of antibiotics and then heavy doses of probiotics.

 

I truly understand your frustration. But the only thing worse than being told you ARE Celiac when you're NOT, is being told you're NOT when you ARE. The latter is a mistake that can rob you of your health, life, relationships, memories, career and eventually you end up on your death bed wondering how you got so sick. It happened to me so please check this doctor's credentials. I never had diarrhea or weight loss or "typical" symptoms of Celiac disease.  I would have passed the muffin test.

 

Check into one of the university hospitals that specialize in Celiac research and diagnosis. Mayo Clinic, University of Chicago, and there is one in Boston as well. Or perhaps a local university hospital near you with a reputable GI division.

I wish you the best & don't give up until you get a proper diagnosis! 

I haven't heard of that type of test with the muffin either nor have I done it.  That is just the way he test for gluten sensitivity after he rules out the patient doesn't have Celiac.  He did not give me that muffin test and said he won't if he finds out I truly do have Celiac, sorry if I confused you on that. I prob will refuse the muffin test as well.  Isn't there another way to test for gluten sensitivity?  No I haven't been tested for my small intestine for bacterial overgrowth. What is a hydrogen breath test?  The doc I am going to now I found through the Celiac Foundation.  The Mayo Clinic and Boston are too far from me to go to.  I wish I was close to the Mayo Clinic.  I'm staying gluten free not risking my health.