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Questioning Celiac Diagnosis..?
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13 posts in this topic

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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    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
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