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So Frustrated


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#16 nvsmom

 
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Posted 22 August 2013 - 06:45 AM

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. :wacko:

 

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


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#17 mommy2krj

 
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Posted 22 August 2013 - 09:43 AM

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!


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#18 niese

 
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Posted 22 August 2013 - 10:47 AM

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  :P 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. 


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Have a Bless Day!  :)

 

Denise

 

 


#19 niese

 
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Posted 22 August 2013 - 10:58 AM

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. :wacko:

 

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.   :wacko:


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Have a Bless Day!  :)

 

Denise

 

 


#20 mommy2krj

 
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Posted 22 August 2013 - 01:42 PM

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! :rolleyes:


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#21 1desperateladysaved

 
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Posted 22 August 2013 - 06:12 PM

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.


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#22 Celeste77

 
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Posted 22 August 2013 - 08:15 PM

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! 


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#23 niese

 
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Posted 23 August 2013 - 05:03 AM

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. 


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Have a Bless Day!  :)

 

Denise

 

 





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