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Confused About Biopsy & Other Celiac Info
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Hi: I'm finding this info very helpful but am still very confused about several things. After years of annoying & varied symptoms ranging from stomach trouble to fatigue to joint & muscle pain (I was finally suspecting fibromyalgia), and at least two doctors telling me how I felt was "probably just stress," my gastro symptoms got significantly worse and I had a colonoscopy, fortunately negative (family history -- my father died of colon cancer) and extensive blood work...which came up positive for gliadin antibodies -- what my doctor called a "weak positive" of 24 -- and said it looked like I had "gluten-sensitive enteropathy." He said having the biopsy was the gold standard for determining celiac disease, but that since it was an invasive test, if I wanted to, I could just try a gluten-free diet for 3 months and then have the bloodwork re-checked. After just undergoing the delight of a colonoscopy, I decided I'd rather bow out of invasive tests for a while & try the diet first, but now I have lots of questions. OK, here are my three basic questions.

1. What's the difference between gluten sensitivity (or gluten intolerance) and celiac disease -- is it just in degree of severity? Did the doctor not consider me having celiac because of the weak positive reading & also non-confirmation in biopsy? Does gluten intolerance turn into celiac if it goes unaddressed? I've picked up bits & pieces of info on this but am still not clear on the distinctions. OK, sorry, that's all one question.

2. I just found out that once I've been gluten-free for 3 months, there's no real point in having a biopsy done then since nothing will probably turn up. Should I insist on the biopsy now before I stay on the diet (only 2 days so far)? Do people who've been through this feel it's important to get the biopsy to determine the extent of damage?

3. Should I be taking vitamin supplements if I am gluten-free? The doctor didn't mention it, but I've seen some mentions of it on this site, & I'm wondering if it's just for people who dropped a large amount of weight and were basically becoming malnutrient due to their celiac disease. What do people take, and do only those who've had complications take supplements? (I see that osteoporosis is one of them, & I have no idea how you're tested for that).

I'd really appreciate any insight from people who've already been through the wringer on this. I know these are a lot of questions. Whatever you can tell me will be of enormous help, and thanks so much for this. It's very comforting.

Ellen

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1. Okay, the reason you are not clear on the distinction is because the medical field is also not clear on the distinction between gluten sensitivity/intolerance and Celiac Disease. It is basically an issue of degrees of severity and if you are gluten intolerant and continue to eat gluten then chances are very high that you will eventually get Celiac Disease.

2. If your doctor is willing to consider to say you are gluten intolerant based on the blood tests and diet, then I don't see any reason for the biopsy. I was gluten free for two weeks and then back on gluten for two months and still tested negative on the biopsy. I had been on the gluten-free diet before a few times and the more you are gluten free the longer it will take back on gluten to show the visible signs of damage, but the symptoms are so much more pronounced that you will probably not be able to eat enough gluten for long enough to be tested. So it depends on whether you want the biopsy or not. There is a high chance that it will be negative anyhow, since not all labs are good at interpreting the results.

3. Vitamin supplements are up to the individual and their specific needs. I prefer not to use them, but have now started using enzymes to help with my digestion and calcium/magnesium supplement since I no longer eat any dairy, and I have purchased some gluten-free chewable vitamins to take on days when I don't get enough fresh fruits and veggies, etc. I prefer childrens vitamins since I can take a half a dose or a full dose as I feel I need it. As for how you test for osteoporosis, I think it is a bone density scan. I've not had this done, so I don't know for sure how it is done or anything like that.

I hope this helps asnwer a few of your questions.

God bless,

Mariann

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You can be gluten intolerant with inconclusive biopsy result, as it happened in my case. I have had no less than 3 biopsies, spread over a 18 months period, all of them coming "inconclusive" (meaning that they did show some duodenum membrane damage, but not as much as expected of celiac disease).

In this respect, doctors seem to name true celiacs only those that have severe villi damage.

But sincerely, gluten sensitivity will sooner or later turn into gluten intolerance, and gluten intolerance will force you to stop eating grain containing foods.

So don't jump to do an endoscopy / biopsy, because it is not only less accurate than blood tests, but it is also frustrating to undergo this highly unpleasant procedure only to hear 3 weeks later that it was... inconclusive.

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Thanks Mariann and Andrew for your advice on the biopsies and vitamins. What you say makes sense and I don't think I'll opt for having an endoscopy done right now. (Three endoscopies sound awful.) I guess I'll have to decide based on whether I feel much better at the end of this 3-month period.

I am wondering, though, about something else and I wonder if anyone can shed some light. Before I went on this gluten-free diet (only 5 days ago), I wouldn't have called my symptoms as severe as some other people's who I'm reading about. There were many days, and even weeks, that I didn't have bowel problems and things seemed sort of fine...but then again, one of the things that finally drove me to a GI doctor was spending so much of my life nauseous. I realized it's not normal to feel sick almost every day, even if you don't have diarrhea every day. Besides the frequent nausea, I was experiencing gas, bloating, and sometimes painful intestinal cramping (along with episodes of alternating diarrhea and constipation -- but not the way some people seem to refer to it, as being in the bathroom 15 times a day). The intestinal problems were definitely worse after September 11th (I live in NY) so of course I attributed that to stress. Other symptoms over the last 8 years have included chronic fatigue and lack of energy, muscular and joint pains, and other auto-immune type complaints (you know, the kind of things doctors usually say are caused by depression, anxiety, and stress).

So, because I led a very high-gluten life -- constant bread, muffins, waffles, pasta, pizza, pretzels, etc. -- and didn't have extreme reactions to everything I ate, and now that I am gluten-free, if I do end up getting some hidden gluten, or were to receive communion at my church (small wheat wafer), or had some cross-contamination (my kids and husband are still eating bread, etc.), would I notice a dramatic reaction to this, and more severe than what I would have experienced before giving up gluten? If so, is this because after giving up gluten, my body becomes more sensitized to it?

I'd really like to know other people's experiences with this because so far I am still not clear on this issue. Thanks very much.

Ellen

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Research has shown that you can be Gluten Insenitive/intolerant and never develop Celiac Disease. The Intestine requires the Gene DQ2 or DQ 8 to be present for you to be diagnosed with Celiac disease, as it is an auto immune disease, not an extension of an intolerance.

You either have Celiac or you don't it is not a case of different degrees. Kind of like being a little bit pregnant, you either are or you are not.

Many people have positive bloods yet there is not evidence of Celiac disease in the gut on biopsy, I guess this would indicate and intolerance.

A great resource for further clarification here in the Center for Celiac research in Maryland. these guys are considered the experts in the field of diagnosis and research etc. they have some great reading etc.

Good luck

Wendy

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The problem occurs when people have the gene (I have DQ2) and the symptoms of Celiac Disease (a very obvious intolerance to gluten based on my symptoms and improvement on the gluten-free diet), but have a negative biopsy (like me). That leaves us in the grey area. We need to be on a gluten free diet, but the doctors won't give us a diagnosis. So that leaves us on our own. And there are far more of us out there with situations like my own, than there are people who have a clear cut diagnosis of Celiac Disease. <_<

So my opinion is that more research needs to be done. Too many people are slipping through the cracks. But I do agree that you can have an intolerance to gluten, and not have the genetic background to support celiac disease. But most doctors don't seem to know how to diagnose gluten intolerance/sensitivity either, and the treatment is the same. Lifelong adherence to a 100% gluten free diet.

God bless,

Mariann

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Ellen, I did not have symptoms that were consistent either. There would be some that were there daily, and others that would come and go. I think this has to do with the nutritional deficiencies and the fact that there will be some days where you get different amounts of the nutrients you need and other days you may be low on a lot of things you need, so the symptoms can often come and go. Does that make sense? I don't know if I am getting my point across the way I want to.

Also you will notice a stronger reaction to gluten the longer you are gluten free. Your body likes being gluten free so it tells you when you get some. Before, while you were on a high gluten diet, it was so used to the constant gluten that the symptoms would be less pronounced, but be assured your body is just doing it's job better now! :)

Your symptoms sound so much like mine were sometimes I feel like I am reading my own story! :rolleyes: But I guess that is the nature of the disease.

God bless,

Mariann

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Thank you Mariann and everyone for your replies. I am wondering how you find out if you have the gene marker (DQ2 or 8) that people mentioned? Is that something that is determined from a biopsy?

Ellen

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You can have a gene test done, either by blood test or by cells from the lining of your mouth. Both need to be done by good skilled labs and only a few labs in the country do genetic testing. Prometheus costs around $750(they do the celiac panel first and then run the gene test if it is negative, I don't know if you could get just the gene test. And they give a 25% discount if you prepay by credit card), but Enterolab only costs around $150 (and you can order it directly and perform the test at home and mail it in).

Mariann :)

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Hi,

I was reading about your stomach problems, nausea, bloating. I also

had these and I agreed to have the Endoscopy done and I'm glad I

did because I have gerd/esophagitis and IBS as well as an allergy to wheat.

If this condition had been left undiagnosed it could lead to cancer. The

procedure is very much easier than the colonoscopy, there is no prep,

just nothing by mouth after midnight. You get IV meds and are in a twilight

sleep. It only about 45 min and is not that unpleasant..

Hope you are feeling better...

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Thanks for your advice. And also for the info about the endoscopy, Judy (I was afraid it involved the same horrible prep as for the colonoscopy). I am wondering how an endoscopy can show IBS and other similar hard-to-diagnose things? I didn't know that IBS showed up as a physical feature.

I am considering going ahead with the endoscopy partly because I am still having symptoms after being gluten-free for 3 weeks (although from reading here and other places I guess it's a one step forward, two step back kind of process, and it's very possible I am getting some hidden wheat or contamination or am allergic to other things...boy, the possibilities get discouraging) and am concerned that I might have other problems in addition to being celiac. What I'm worried about is that an endoscopy might not show anything after being gluten-free for 3 weeks -- from what I hear, it's hard enough to see conclusive results even while still on a gluten-filled diet -- and it will have been an invasive procedure for nothing.

My symptoms are improving, but have had several episodes of bad stomachaches and nausea still, and it's tiring and frustrating to think about every little thing I ate that might have caused it (was it this? was it that?). I am going to be seeing my gi doctor today to ask a bunch of questions now that I am more educated on this (apparently he is so busy that he will only answer patients' questions during an appointment, not by phone or email). But in general, the whole thing is very disappointing when you are giving up so much and still don't feel well some of the time (also people's reactions: "so, that's good, right? because it means you're not allergic to wheat!" or "what's the point of giving all that stuff up if you're still feeling sick -- you might as well eat it!"). I'm sure some of you can relate to this, and to not feeling all better right away. I'm trying not to be too discouraged, but it's hard. Thanks for all the info & help.

Zippyten

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Zippyten,

Glad to hear you're considering the endoscopy, I think it's the way to go. The medical community will not believe you otherwise, that is an unfortunate fact. It may come back inconclusive, but it may also show a problem like an ulcer or gastritis that is easy to treat and can stop your current discomfort. My endoscopy lasted a total of about 5 minutes, and I requested they not use the drug versed, so I recall the whole thing. It's nothing, don't even worry about it. I'm having my first colonoscopy in April and I'm really scared, mostly because I know it will take longer than the simple endoscopy and I have a heart rate problem that can lead to problems with sedation. Of course I'm also afraid the procedure will hurt! I've heard some say the colonoscopy is nothing to fear, that only the prep is the bad part...but all I can say is I hope so! Have the endoscopy, though, you'll be glad you got it over and done with. Good luck,

Gillian

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Gillian,

Thank you for the encouragement. I'm going ahead with the endoscopy because the doctor wants to investigate for signs of ulcers etc. & do the small intestine biopsy at the same time. I'm actually relieved to have the decision made and will be even more so when it's done. As for the colonoscopy, I had one in January right before I was diagnosed with celiac disease, and it's true what everyone says -- the prep is worse than the procedure. As long as the doctors are aware of your heart issue, it won't be a problem. I was pleasantly surprised at how fine I felt afterwards (& didn't feel a thing during, since I was pretty much out) though a bit weak and tired from the fasting and purging. I even walked the dog when I got home. So try not to worry, yourself. It is a very important test to have and one of the best things about it is it won't need to be repeated for a while. Good luck.

Ellen (zippyten)

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Ellen: Thanks for all your sharing and questions.

Unlike some, I was able to already be labeled Celiac based on one IgA antibody test, even though the other tests were negative. Seeing how Celiac is in the family, I have to say if the blood tests get much worse, I will give in and go gluten-free. I dont have any symptoms, but some tummy rumblings are getting worse so am going to have another blood test done.

Anyway, your situation struck a chord because hubby was asking me tonight if you can have an intolerance without celiac disease. In my case, I would say it would eventually lead to celiac disease.

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    • Hi everybody,  I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it.  I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis.  Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty. Since I have had symptoms for only about 10 months, could there not be much damage yet? Sorry for the long post! 
    • The best thing you can do is get to your regular doctor and have a celiac panel run. You might also ask to see an allergist. Be sure to keep eating gluten until all celiac related testing is done.
    • Sounds like you may be alleric to something in both products. Next time you are at the store compare the ingredients of each to see if they have one in common that you don't think you eat in other products..  It might be a good idea to schedule an appointment with your doctor for a referral to an alergist to be on the safe side.
    • I don't know if this will help while you are waiting on the endoscopy but figured it might so here goes... If your life permits you could try going to bed so you can get up a couple hours earlier. Then eat something shortly after you are up like Cream of Buckwheat or Cream of Rice, an egg or something else gluten-free. You don't have to have gluten at each meal while waiting for your testing to be finished and something gluten-free for breakfast may sit better. You can get your gluten at lunch or dinner. By getting up a couple hours earlier that may allow you system to 'clear' the D and relieve a bit of the anxiety.  Ask your doctor if you can take something like Immodium with the antidepressant. That may help your day be easier and lessen the D the next morning.
    • I'm wondering if anyone else has experienced this.  I have been eating toasted Udi's gluten free cinnamon raisin bread the last few mornings with either butter or almond butter.  This morning, right after eating it, I started having uncontrollable, violent fits of coughing and choking.  I was finally able to drink a lot of water, then I had a Ricola lozenge and took some ibuprofen, and my system finally calmed down.   I had this same experience several years ago after eating some gluten free Van's waffles.  Has this happened to anyone else?  I'm at a loss, as I've never reacted to butter or almond butter this way, and not to the ingredients listed on the Udi's package, unless I have an undiagnosed sensitivity to something.  This was scary, needless to say, I will be avoiding Udi's products. 
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