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Questioning Celiac Diagnosis..?
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This may be my first post, but I have been secretly stalking these forums for a long time, only now did I bother making an account because I am quite puzzled.

 

I was diagnosed with celiac either 2 or 3 years ago, I don't really remember to be honest. They only did a blood test since I did not feel like getting an endoscopy done since I thought the blood test was probably pretty reliable right? So I went gluten free right after and although I can't remember exactly how bad my symptoms were before, I still get symptoms even many years later. I am questioning this diagnosis right now. What if I don't even have Celiac, but something else completely? I don't remember exactly what blood test they did to diagnose it. I am probably going to see my doctor about this soon, I just turned in some stool samples to check for parasites and C. Diff ( I had been on antibiotics for Acne :S) 

 

I was just wondering are there any other conditions that would produce positive results on a blood test that might cause some same symptoms as celiac? Or is there maybe some other reason going gluten free is not helping? I am pretty positive it is not cross contamination as I check everything before I eat. I won't even touch food that has fallen on my counter because other people in my house eat bread and leave bread crumbs everywhere, but I try and make 100% sure nothing I eat touches any surface in my kitchen, even forks and spoons and whatever else.

 

Any ideas on what the issue could be???? I am at a total loss and I just want things to get better. ):

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Possibly milk products? Lactose in celiacs can mean trouble. I just had a problem the other day from Gluten free mac and cheese. I totally forgot. :( 

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It's true that there are other things that can cause a particular serological test to appear positive. Can you check what tests they did to see whether you had more than one that was positive and what tests those were exactly? After that, you'd have to research what the other potential causes of that particular test or tests being positive are and see whether they are likely options for you. (In my case for example, Giardia or tropical sprue seemed like strong possibilities that could have explained the positive bloodwork and the biopsy, but the success of the diet in sorting out my symptoms settled the question.)

 

Did you have an initial period when you went gluten free where your symptoms improved at all? If so and then symptoms, returned, it's possible that you do have Celiac, but have additional intolerances like some people do. As mentioned, it could be lactose, or soy or corn or one of the other grains that could have become more prominent in your diet since going gluten free.

 

If you really think you have been misdiagnosed, you could try gently reintroducing some gluten (ie. a mini gluten challenge). If you don't get new or worsened issues, then gluten might not be the root of your problems. Having a medium amount of gluten in your diet for a few months would also allow you to have new blood tests and a biopsy. But, if you do have Celiac, this will do your body harm and could cause your symptoms to get worse. Good luck.

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My guess, and it's only a guess, is that you've got something else going on in addition to celiac disease.  Many of us have other health issues that are linked to celiac disease, whether they are caused by untreated celiac disease or just tend to show up with it is anyones guess. It is possible that something else is continuing your symptoms.

 

For instance, I have hypothyroidism (Hashimoto's) and many of what I thought were celiac disease symptoms only resolved when my thyroid issues were treated (fatigue, hairloss, puffiness).

 

What symptoms are you still having? What symptoms have improved or disappeared?

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The only symptom I really ever had was diarrhea and I still get diarrhea like at least once a week. I guess discomfort accompanies it but I think that's pretty normal. Sometimes it hurts somewhat but other times it doesn't. I already take pills for the lactose thing since I first started having issues when I was around 13 and the lactose pills seemed to help a lot. Apparently I was also lactose intolerant when I was a baby, so I don't think the lactose intolerance was caused by celiac.

 

I know one of the best ways to figure this out would be to just eat some gluten and see what happens, but I am kind of freaked out about what might happen to be honest. I have heard peoples' symptoms get worse after having been off it and then eating it again, and I am pretty sure I have been 100% off it for nearly 3 years already. :S I was mostly wondering if it might be something like crohn's or UC instead of celiac... I am most probably going to make an appointment with my doctor and get him to send me to someone who specializes in this stuff since at the moment I was just seeing my GP.

 

Or, what are the chances of having both IBD and celiac disease? What about having both celiac disease and Diabetes-1? I have not been diagnosed with diabetes but I have reason to believe I might... Its just that I am going to have to wait until monday to get a doctor's appointment. 

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A low positive tTG IgA can point to a few other problems like thyroiditis, liver disease, diabetes, crohn's and colitis but that is in approximately 5% of all positive test results. If it was strong positive, it is most likely celiac disease. 

 

Check out page 12 of this report for how reliable the tests are: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

IBD (IBS) is a label used to describe symtoms but it is not the cause of the symptoms. Sort of like a doctor saying that a patient suffers from headaches when the root problem is a brain tumour, KWIM? Many around here were given a diagnosis of IBS before they finally figured out that it was celiac disease. Many still suffer from some (yet usually reduced) symptoms of IBS even after going gluten-free. "D" once a week could still be attributed to a damaged gut - I'm assuming that is an improvement from your gluten eating days? Perhaps it is something else you are eating only periodically? Perhaps try cutting out dairy entirely rather than taking lactase pills?

 

I would advise against a gluten trial if you were already diagnosed as a celiac. Why hurt yourself to retest? I think it would be wiser to look into suspected health problems instead of re-visiting the celiac disease diagnosis - It probably won't make you as sick either.  ;)

 

Since celiac disease is an autoimmune disorder, it tends to run hand in hand with other AI problems. Diabetes type 1 is the AI disorder most linked to celiac disease (I believe). Thyroiditis is found in over 1/10 of celiacs. Lupus, RA and others are more common with us than the regular population.

 

Good luck with the doctor

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Lol, easy mistake to make. I meant Inflammatory Bowel Diseases (IBD) not IBS-D. But no it isn't really an improvement over when I was eating gluten. for the past couple of months its been especially worse, getting diarrhea every couple of days, and yeah they didn't show me the actual results of the test, but I think they told me it was slightly elevated and I am pretty sure they tested for transglutaminase whatever. I am going to go see my doctor on tuesday since my recent worsening of symptoms seemed to have started after taking the antibiotics for acne, I thought it might be C. Diff, but it came back negative.

 

I am thinking it might be Crohn's or UC since there seems to be periods when I feel good then it gets bad again. I am seriously thinking of trying to eat some gluten to see what would happen though, but I'll probably wait until after Tuesday and see my doctor first. Also, I already had blood tests done twice for thyroid and came back negative both times.

 

And I mean, other random symptoms I have been experiencing might be related to this, maybe I just wasn't linking them to my digestive issues. I've gotten things like random shortness of breath, chest pains while breathing, cuts on my feet that took years to heal even though I was keeping them clean and bandaged, burning in my heels that felt like my feet were on fire... But these things usually go away on their own fairly quickly (apart from the cuts) so I figured it was nothing. I never even mentioned them to my doctor, though I probably will on Tuesday. Maybe this is all part of one autoimmune disease? (How great would that be?!) :P I also still haven't been able to put on weight even since going gluten free.

 

Also yes, I might have to try to just cut out dairy completely for a while and see what happens... My diet just feels so limited already... lol

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It is not normal to have cuts that don't heal . So how did the Dr. Appt. go?

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Antibiotics for your acne?  Has anyone thought about long term side effects of the drugs you were prescribed?

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Lol, easy mistake to make. I meant Inflammatory Bowel Diseases (IBD) not IBS-D. But no it isn't really an improvement over when I was eating gluten. for the past couple of months its been especially worse, getting diarrhea every couple of days, and yeah they didn't show me the actual results of the test, but I think they told me it was slightly elevated and I am pretty sure they tested for transglutaminase whatever. I am going to go see my doctor on tuesday since my recent worsening of symptoms seemed to have started after taking the antibiotics for acne, I thought it might be C. Diff, but it came back negative.

 

I am thinking it might be Crohn's or UC since there seems to be periods when I feel good then it gets bad again. I am seriously thinking of trying to eat some gluten to see what would happen though, but I'll probably wait until after Tuesday and see my doctor first. Also, I already had blood tests done twice for thyroid and came back negative both times.

 

And I mean, other random symptoms I have been experiencing might be related to this, maybe I just wasn't linking them to my digestive issues. I've gotten things like random shortness of breath, chest pains while breathing, cuts on my feet that took years to heal even though I was keeping them clean and bandaged, burning in my heels that felt like my feet were on fire... But these things usually go away on their own fairly quickly (apart from the cuts) so I figured it was nothing. I never even mentioned them to my doctor, though I probably will on Tuesday. Maybe this is all part of one autoimmune disease? (How great would that be?!) :P I also still haven't been able to put on weight even since going gluten free.

 

Also yes, I might have to try to just cut out dairy completely for a while and see what happens... My diet just feels so limited already... lol

"my recent worsening of symptoms seemed to have started after taking the antibiotics for acne"

 

Bingo:  It is possible that some antibiotics--especially if taken long term--might significantly interfere with the growth of healthful, protective gastrointestinal bacteria and cause diarrhea in some people who have gastrointestinal problems.  Probiotics can help to reverse or prevent this to some extent.  Do you take any probiotics?  Can you speak with your doctor about stopping the antibiotics and possibly look for alternative treatments for your acne?  By the way, I've indicated below one publication which elaborates more on these issues.

 

 

Azithromycin versus tetracycline in the treatment of acne vulgaris
R Rafiei, R Yaghoobi - Journal of dermatological treatment, 2006 - informahealthcare.com
... Taking probiotic micro‐organisms helps prevent antibiotic‐induced diarrhea. Treatment with

antibiotics also commonly leads to an overgrowth of Candida albicans[13], and vulvovaginal

pruritus, which we observed in the tetracycline group, but not in the azithromycin ...

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Have you had your iron levels checked? Shortness of breath and wounds that take a while to heal are signs of iron deficiency. Also, have a look into FODMAPS diet. Cutting out certain foods may help with your GI isues.

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 I am pretty positive it is not cross contamination as I check everything before I eat. I won't even touch food that has fallen on my counter because other people in my house eat bread and leave bread crumbs everywhere, but I try and make 100% sure nothing I eat touches any surface in my kitchen, even forks and spoons and whatever else.

 

Do you have a separate toaster? Are you SURE nobody sneakily uses it? How about microwave, wooden spoons? Pots that have small pits or scratches, that even washed could hide gluten? Separate cabinets? Have you considered airborne particles? Crumbs dropping in your silverware drawer? Cosmetics, shampoos, lotions, hair dye, etc?

 

I agree about the antibiotics also, it may have messed up your gut bacteria. I also agree cuts taking a long time to heal is not normal. Also the tingling and other symptoms you mention could be signs of certain nutrient deficiencies that may be continuing to affect you even if your villi are healing. But I worry that you still have diarrhea once a week. It is not really normal at all, unless you can account for it by eating a ton of watermelon at once or something.

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I am really wondering what your Dr. Said. And wonder if you take Probiotics? They really help withe D. And we will hope it is not Crohns , I have a friend with Crohns and it is not good. She has had 3 bowel re sections and is a big fat mess. So lets look for the other stuff first. Also Crohns is usually something that runs in familys. Do you have ANYONE in you family that has it? Uncle , Aunt, Cousin? Grandparent? If not it probably isn't. Crohns and Celiacs have alot of the same symptoms. ALOT!! So I am guessing it is your Celiac acting up. beings you were Dx'd. I hope you find the answer to your problems and feel better soon. Keep us informed!! :)

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    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
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