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Coeliac Disease Query
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Hi.

I was blood-tested two years ago and was found to positive for antibodies to gluten. The hospital consultant said that no blood-test can ever be 100% accurate and that I should also have a gut biopsy taken. I had this done and was subsequently told by the specialist that the results were negative for celiac disease and that my symptoms all added up to IBS. I have had all kinds of symptoms over the years, sometimes acute bouts of diarrhoea, but predominately constipation. I sometimes get stomach cramps/bowel spasms/wind/nausea, which is usually followed by needing to go the toilet quite a few times. The gassy pain usually improves after that, although it usually takes a couple of days for the pain to have completely gone. Without wanting to go into too much detail, most of the times I empty my bowels, I pass hard, pellet-like stools, which quite often have mucus in them (well, I guess I did go into detail after all!).

I also suffer from anxiety/depression and have been taking 20mg anti-depressant daily now since the beginning of 2000, so I can understand why IBS was the end diagnosis. But I have since been told by someone from the Coeliac Disease Society that it is possible that my biopsy results were fine because the disease was in the early stages and therefore no damage had been done by then. She said I should ask for another blood test and if it is positive again, I should have another biopsy done. She also said that it was possible that my blood test results were wrong in the first place.

I haven`t changed my diet at all and still eat foods containing gluten.

I would appreciate it if anyone has any thoughts, suggestions, ideas.

Thanks in advance,

Michael

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I thought there was a difference in the set of anti-bodies for celiac vs gluten-intolerance.

There are ppl who frequent this forum who know the specifics. Or just search for IgA and/or some of the other terms.

There is a genetic test. Either the celiac genes are there or they're not.

If they are, you'll be glad u didn't wait for a positive biopsy. Your symptoms are bad enough already. I had what seemed like crippling tho sporadic cramping and spasms until i stopped all gluten.

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If you're still suffering I'd redo the tests. The blood tests are rarely false positive, meaning the odds are high that you DO have it. It could be you were in the early tages of intestinal damage, or even possible the damage was there but the samples the doctor took were from undamaged areas.

richard

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If you decide to go through with the testing and they come back negative and you are still suffering you could always try the gluten free diet for a couple of months to see if you notice an improvement.

All of my blood test and biposies were negative then I was tested through Enterolab and received a positive dx. I started the gluten-free diet and could tell a difference within a few days.

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I too was a ton better w/in just a few days of 100% gluten-free.

Try it !

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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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