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I'm So Frustrated, Please Help Me Out!
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13 posts in this topic

Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

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Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

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Deleted by poster. See my below post.

Edited by Coulter
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If you were gluten free for 8 months and then only went back on gluten for 4 weeks then a negative biopsy could result in that. They recommend a good 3 months of heavily consuming gluten before testing.

The Enterolab is a good test even though it is not widely accepted by the medical community. I have heard nothing but great things about it and they are on to something big. Also 98% of celiacs have the DQ2 or DQ8 gene....you have the DQ8 gene.

Before you had blood tests the first time were you gluten free? When they did the colonoscopy what did they conclude?

Did you notice a big difference after going gluten free? It sounds like you definitely have a problem with gluten.

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Laura--yes, you could be gluten intolerant and are on the way to full blown celiacs--Dr. Green says that if you do have the DQ 8 gene, then chances are good you could be celiac--at any rate--if you feel better gluten-free then go gluten-free--dont let any doctor change your mind about it--i feel you are a celiac and they just have not found the spot that shows them--its your body, your health--take care of it--its the only one you will ever have---Deb

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Thank you Kaiti for your reply.

The initial blood work and colonoscopy from the first Dr. was NOT gluten-free. When I did Kimball and Enterolab, I had only been gluten-free for 1.5 months.

I definately did feel better gluten-free, but not 100% which was why Dr. #2 wanted the endoscopy. I told him all of my concerns about not having enough damage or sporadic and he assured me he would do multiple biopsies.

I guess there could have been cross contamintation issues as DH is not gluten-free. I will go back to gluten-free and try to be more careful and see if I can't get to being 100% better. I had been sick for so many years, I was looking for a conclusive answer, but I don't think I'm going to get one :(

Thanks again,

Laura

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It's good you were feeling better though. At least you know there is a gluten issue.

When you went gluten free were you 100% gluten free? Like did you check lipsticks (alot have wheat starch) and other products that you put on your hands, face, and head which can easily get into your mouth.

Is there a reason why you need an official diagnosis. The only way to go for that is go on gluten for 3 months but if that causes problems is that worth it? Especially when you have positive Enterolab and a main gene.

If you need any help with anything let me know :D

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I agree with Kaiti, if you know that your body reacts badly to gluten, and is better without, then why put yourself through any more frustration and pain with further testing. You DO show markers for celiac, you just may not have sustained large amounts of damage yet. IMHO gluten intolerance is GLUTEN INTOLERANCE and you know your body better than any dr. Especially since most of the Dr's out there are operating under outdated information and with labs that don't know how to read the test results.

I'm so glad my Dr. recognized all of my symptoms as Celiac BEFORE he did test one. He saved me so much unnecessary suffering and pain and got me onto the road to recovery so much quicker. When I went to him for my yearly follow ups the first year gluten-free and then the second year gluten-free, he was so pleased with my recovery and I'm so pleased too!

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I, like you, have a nin-com-poop for a doctor. YOU and only YOU know your body and what you need for it. If you can shop for another doctor do it, if you can't, go to your appointment and leave knowing you know more than someone who spent way too much money on their college education! If it makes you feel better, treat yourself as if you a celiac, diagnosis or not (thats what I do :D ). I am finally starting to feel better now that I don't live and breathe what the doc says. That doc does not have to live with your body, you do, so you do what you need to to be healthy!

Christi

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oh and Laura,

If you are like me and think you need an official diagnosis to prove you are not insane and this is all in your head, here is your official diagnosis.

positive celiac disease!!!!

ok, so it may be your favorite music celiac disease, celiac's disease, or Christi's dementia,

You decide ;)

Christi

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I have a friend that is allergic to wheat (shows up on allergy tests), but negative blood tests for celiac. Has a physical reaction to wheat without the villi damage...

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Sorry, everyone, this post will look a little weird. There were two posts made and I said DUPLICATE under one, but posted right before Deb did, so she hadn't seen the notice. Then someone else posted under Deb, etc. Meanwhile the other topic also developed. So I just merged them--hence, the two first posts say the same thing.

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Thank you all so much for your responses. I'm so tired of going around in circles, and you have helped me out with your words of wisdom.

Kaiti, I know you asked why I was looking for an official diagnosis, and I guess my answer to that is because both Dr's were trying to tell me that it must be something else because the diet was not working 100%, only about 80%. And because some of my b/w was border line, I was starting to believe them.

So, I am going to go back on the diet and be way more careful with not just food, but also the beauty products, as well as taking the dairy out which Enterolab says I have an issue with too. I am going to ignore the dr's for now and see how things go for a few weeks.

Thanks again for all your support.

Laura

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    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
    • The first step is getting a celiac blood panel.   Any medical doctor can order one.  Live near Chicago?  They are do free screenings this month (check their website).  The cost is less than $400 for the complete panel.  If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies.   Here's more information from a reliable source and not just some lady on the internet: http://www.cureceliacdisease.org/screening/ Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan.  I have no idea how expensive that one is.  It's a nuclear test that checks for functionality.  Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube.  Mine happened to actually be rotting (infected).  ER suspected appendicitis, but it was a rotten gallbladder.  I never had any stones (that's what the CT or the ultrasound can find).  I am sorry that you are ill.  Keep eating gluten until all testing is complete.  This is important.  Go gluten free now?  Here's why you shouldn't..... http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/  
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