Diagnoised Celiac But With No Biopsy

[jmik]

Im not conviced that a bx (biopsy) is needed. I bet this will be eventually removed as part of the diagnostic criteria. Once the medical establishment finds enough statistical proof that the blood tests are just as accurate as the bx then the invasive procedure will be unnecessary. Though the point was well made that a diagnostic bx means the medical community can make money off celiac disease, so there is that pressure to keep doing endoscopies.

As for me, I was diagnosed in July 2003. I had been struggling with depression and anxiety for so long, then bruising everywhere. A medline search told me about celiac disease, which was new to me, despite the fact that I've been a nurse for five years! I got the blood test, and that was enough for me. I feel so much better on the diet that it is worth it for me to stay on it. Though it took six month, honestly, for me to TRULY beleive that the inconvenience of the diet was worth it, given that I dont have the more classic symptoms. But I think now my intestines have repaired and I can absorb nutrients again, and therefore my brain chemistry is so much healthier (and happier!)

Bottom line for me: I feel better. Why have an invasive procedure? Who am I trying to prove this to? Just me! I think as a society we have been brainwashed to be dependant on external validation. A part of that is because it keeps our capitalist society rolling, and a part if because we are all strugling with insecurities in one way or another.

I feel lucky to have been diagnosed with celiac disease, compared to so many other diagnoses which cause many invasive tests and medications and the cures/treatments cause so many side effects. The only side effect I have from the gluten-free diet is eating more healthfully and taking better care of myself.

Reading this over I realize that I am still pretty new to the celiac disease and gluten-free world. There may come a time when I do decide to do a gluten challenge, or decide a bx is important to me. Hmmmm.... only time will tell.

[seeking-wholeness]

jmik,

I agree with you about the biopsy usually if not always being unnecessary, and I wish it would be removed from the "gold standard" for diagnosis. (I think stool testing should be used in place of blood work, too, since it is more sensitive.) The financial incentive will probably prevent this, though, at least for a long time.

I also agree with Susan and Mariann that we DO need to stand up for ourselves with the medical community, or they will never take our symptoms seriously. Sometimes, this means playing by their rules--especially when the diagnosis HAS to be official for some reason (e.g. legal issues, insurance coverage for more frequent bone scans and blood work, etc.).

I, personally, plan to be tested by Enterolab as soon as I can afford it, as a sort of protest against the narrow-mindedness of the medical community. I don't REQUIRE an official diagnosis for any reason (although it would be nice to have one, of course), so I refuse to submit to an outdated and injurious testing procedure. I don't have a primary care physician, anyway, so I will have some leeway in the future in finding one who will accept an Enterolab diagnosis. My problems lie more in the family acceptance department, but for myself, I can tell them that I'm gluten-free and that's just the way it is, whether they think it's necessary or not! (I wonder how long it will take them to notice that I'm not almost-suicidally depressed every time I talk to them anymore!)

I'm in something of a pickle regarding my kids, however. The most immediate problem is that both sets of grandparents live out of state, so they would like to have the kids come and stay for a couple of weeks at a time. If they won't keep the kids on a gluten-free diet, though, such visits aren't going to happen (which irritates me immensely, of course, because I could REALLY use the break)! An "official" diagnosis might convince them to comply, but then, it might not--and it only takes one disbeliever offering cookies on the sly to wreck the whole enterprise. There are times when I'm so desperate for a break from 24/7 "nanny duty" that I almost don't care that the kids are sure to eat gluten if they go away for a visit, but then I realize that *I* will be the one bearing the brunt of their gluten-induced behavior "spasms" after they return--and suddenly, sending them away doesn't sound so inviting anymore! If a concrete diagnosis would GUARANTEE that the kids could visit the grandparents and remain gluten-free, well...it would certainly be extremely tempting, in spite of the fact that it violates my personal ethics (they're already gluten-free, so they would have to do a gluten challenge). Unfortunately, I'm not sure I could trust any promises the grandparents make, anyway! My in-laws are probably actually the more trustworthy--I've seen my mother-in-law keep her word when I didn't believe she would. My own mother, however, offers my children diet soda and coffee over my strenuous objections and says, "Don't tell Mommy!" How could I trust her NOT to give the boys bread, or crackers, or cookies--especially since she doesn't believe we could possibly have celiac disease since it "doesn't run in the family"? I guess I have answered my own quandary here--a gluten challenge isn't worth it for the kids, either!

Well, now that I have made a short story long, I just wanted to mention (with no offense intended) that I am extremely envious of individuals who have only themselves to make a decision for, and only themselves to "prove" the diagnosis TO! Somehow or other, I have to "prove" the diagnosis to my kids' grandparents, or I will NEVER get any kind of substantial break from parenting again--and I REALLY resent that! celiac disease has made my life difficult enough that I need MORE help, not LESS! I only hope that I will find the strength to get through the inevitable confrontations, and that the grandparents will eventually come around and accept the decision that I have rightfully made on my children's behalf, whether they agree with it or not.

Thank you for "listening" to my rant; I've been needing to get that off my chest for a while now. I'm glad the gluten-free diet is working so well for you, and I hope you are having a great day!

[gf4life]

Hi Sarah,

Wow, that was quite a post! It got me thinking about my own situation, though. I only have one set of grandparents to send my kids to, and that is not going to happen anytime in the near future, I'm more concerned with when they come to visit us! I have not even mentioned celiac disease to them in regards to me, and was planning on waiting until the kids tests came back before mentioning it to my in-laws. I did mention it to my father one day when he was in town, and he didn't seem too interested, so I dropped it. The kids won't be staying with him, as he is single and rents a room oout to someone else. Not good for the grandkids to stay there, for obvious reasons...

I am concerned about my husbands folks. I have spent the last two years talking to my husband about Celiac. He has just recently accepted that I have it, and that was only after the Enterolab results came back positive and I was feeling so much better on the gluten-free diet, and then so much worse during my gluten challenge. Well my biopsy was yesterday and I am on my 2nd day gluten-free forever!! And I am looking forward to feeling better (although my intestines are already much quieter!) , but the thought of trying to explain the gluten thing to the relatives does not appeal to me. I was thinking about what I will be able to eat when I go there, white rice is about it. Maybe plain salad. They are asian and everything is cooked in sauces that contain gluten, as well as lots of breads and sweet cakes and such. They almost never have just plain old veggies or anything. Even the fruit is in a sauce that I'm unsure of. They like to go to the asian stores and bring back crackers and such for my kids. I'm not sure how I'm going to handle it. It gives me a lot to think about...

God bless,

Mariann

[seeking-wholeness]

Hi, Mariann!

Woo-hoo! gluten-free FOREVER!!! You must feel like dancing for joy!

Visiting family just seems to be a sticky (glutinous??? ) mess in general. When we visit my in-laws, we usually stay for a long weekend. I think next time (my first visit since going gluten-free) I will make and freeze double recipes of gluten-free entrees to take along, so we will be sure not to go hungry--especially the boys, since I can already hear my mother-in-law scolding me about starving them to death with this restricted diet nonsense! It's certainly easier to take food with me than to cook every meal just for us in a strange (and contaminated) kitchen. And while I COULD cook for the entire family, I always end up underestimating how much to make, and they always say my food is...interesting. (I am a perfectly good cook, if I do say so myself, but I prefer ethnic foods of various sorts, while they are meat-and-salad-with-rice-and-canned-vegetables people.)

When I visit my family, I usually stay for a week (and my husband doesn't come, because we don't want to squander his vacation time). I take along staples that I can't find there (like canned salmon in water with no salt added, Soy Garden margarine, and Tinkyada pasta) and some of my own cookware, so I can be responsible for all of my own meals. This arrangement worked out really well last time. I just need to assemble a repertoire of reliably gluten-free recipes, since lugging all of my cookbooks along is something of a drag!

This coming Sunday we are scheduled to visit my husband's uncle and his wife, but when my husband called them to arrange it HE DIDN'T MENTION THAT WE NEED TO AGREE ON DINNER PLANS IN ADVANCE! He was just planning on "winging it"! GRRR!!! It would be one thing if the kids weren't coming along and we could go out to a fancy restaurant with an obliging chef, but since the kids will be with us I imagine that the best solution will be jointly preparing a meal that we will all enjoy. But that means we need to plan it NOW, so we won't end up socializing while we're standing in line at the grocery store! I'm just frustrated, because I am not comfortable calling my husband's relatives myself, and he hates the telephone, and now I'm going to have to pester him until he calls them again and puts me on the phone with them. I wish he would think of these things on his own, but anticipating the needs of other people (anticipating ANYTHING, actually) is not his strong suit! (A friend of mine had a brilliant insight about men: "Men are like fudge: sweet, but dense--and rarely good for you!" )

Well, I hope my ramblings have given you some food for thought! If you come up with any foolproof strategies for telling in-laws things they don't want to hear (and having them actually listen), let me know!

I hope you recover from your gluten challenge in record time!

[celiacfreeman]

You want the colonscopy to rule out cancer that is a related condition in celiacs.

[gf4life]

Thank you Sarah, it sure helps to have all these other people to share expereinces with.

celiacfreeman, I agree with you. I think it is important to have the colonoscopy as well. I had one in November, and I had some inflammation, but no polyps or anything. I think the inflammation was due to the gluten and the casein, which I had just found out I was sensitive to, so I hope it is not a problem. My son's doctor wants me to reconsider being further tested for IBD(inflammatory bowel disease), since he is concerned about the joint pain in both my son and myself.

A sort of strange thing happened when I went for my EGD the other day. I was there for an "Upper Endoscopy", and the paperwork they were having me sign said I was having a colonoscopy! She says to look over it and see if everything is correct. I read the first line and said, nope. She thought my name was wrong, and I said, no I'm not here for a colonoscopy. I had that done a few months ago. So they had to go change the paperwork. It's a good thing I got there early! Then when I got in the room, the computer said I was a 60 year old man named Ronnie! I don't think so. I was wondering if this was a good place to be having the procedure done!

Then I have this really strange memory. Now I'm all drugged up on Demerol and Versed, and the doctor insists on talking to me as soon as the procedure is done. I'm not sure if I am remembering correctly, or if it was a dream, but this is what I remember. The doctor says, "Well you have a hiatal hernia, but you knew that , right?" I said, "no." (Now I didn't have one a year ago when the first doctor did the EGD, but didn't do a biopsy!) Then she says,"oh, well I took lots of biopsies." I said, "good." Now I am wondering if the conversation even happened, and I have to wait three weeks to see her again. As I'm leaving she(the doctor, who was busy talking to another patient's family, and I wasn't going to wait for her) asks if I am okay. I say yeah and she says to the nurse who is helping me out that she wants to see me in two weeks. The nurse says that she will have someone make me an appointment. Well I'm not going to leave it up to these people who can't even figure out what test I'm there for, so I called yesterday to make sure that an appointment was made. The scheduling nurse, says that no appointment had been made, but that she was going to make it. She had my name down on a list, but the doctor told her that I needed to be seen in a month! So she compromised with me and made it for three weeks. I am really sick of these guys!

Well thanks for listening to me rant about my experience.

God bless,

Mariann

[wildones]

Aldo

I have wondered the same thing, many times when I have read postings here. My son, who was the first to be diagnosed in our family, had false negative blood tests (the older, less effective in diagnosing ones) and never had anything suggestive of celiac show up on quite a few biopsies, until his last one. He has short bowel syndrome (had 70% of his small intestines, his ileocecal valve and part of his colon removed as a newborn) and so he had a lot of testing done for related issues. He had a repeat biopsy that confirmed that the damage had healed. My other son was diagnosed, as I was through the newer blood tests.

Why in the world would you back on a gluten containing diet to confirm what you already know, cause a huge setback and potentially cause damge to yourself. A blood test is enough to confirm a diagnosis. Sometimes an endoscopy is done to investigate the extent of the damage, but it is not necesary to confirm celiac. If you are still having symptoms after a reasonable period of time on a totally (not partially) gluten free diet, then probably a GI dr would want to investigate with a colonoscopy and an endoscopy, to see if you have secondary or compounding issues.

[dotandevan]

This is in response to Sarah's posting regarding grandparent compliance without diagnosis. I have a very similar problem. My 11 month old son gets horrible diarrhea from gluten and is doing fine now that I don't feed him gluten ( Not too hard since I am generally the one feeding him). I just mentioned this problem to his doctor and she rec. gliadin IgG and IgA and tissue transglutinase antibody IgA. I took him to get his blood drawn but they tried unsuccessfully to draw blood from his pudgey arm. I know a blood draw is not an invasive procedure, but it was still stressful to Evan to be restrained and poked and surrounded by strange people. Should I try again to get his blood drawn? Is there any point since he has no issues as long as he is gluten free? There is a very selfish part of me that wants a medical diagnosis so friends/relatives will take me seriously when I say he can't have wheat ( I haven't began trying to explain gluten, but wouldn't you think people would know that pizza crust or crackers contain wheat?). Any advice would be greatly appreciated.

-dotandevan

[trishz5]

I understand what you are saying about going on the diet even without firm confirmation, but what do you do in the case of a child too small to tell. My child, now three had a viral illness that resulted in three months of diarrhea when he was 2 years old. He had many tests to determine the reasons behind the diarrhea and all came back negative. I eventually asked about the possibility of GSE or celiac disease. We had the blood test done and it was negative. My doctor did not think a biopsy was indicated. However the diarrhea was not resolving. I put my son on a gluten-free diet (lets say no obvious sources of gluten) and added pro biotic to his meals. Within 2 weeks the diarrhea stopped. However he remains sensitive to dairy (he gets a mild rash on his trunk with milk) but can tolerate small amounts of cheese and yogurt. I only kept him on the diet three weeks and as per my doctor slowly added back grains. He appears to do fine on a "normal" diet.

However

He has a big belly and seems to get a lot of colds, and recently had tubes put in his ears. and all of those theings are normal for his age and the fact this is his first year in daycare.

Am I reading too much into that one incident with concern towards the future?

No one else in my family has any problems but my husbands parents are from Italy and have had colon cancer and bowel problems (no diagnosis of celiac but I don't think they were ever tested) and are both under 5' tall.

I am a dietitian and sometimes think that because I am so familiar with certain nutritional diseases I may be reading too much into the situation.

Do I possibly unneccessarily put him on a gluten free diet or possibily unnecessarily subjuct him to a biopsy that may not show any damage even if he has celiac.

[amfcsg]

I've been reading everyone's story about how they were diagnosed. I recently had a blood test for celiac that was inconclusive. The doctor said I had a deficency in some antibody and that would show a negative result even if i was celiac. I'm now scheduled for a biopsy as well as a colonoscopy. I'm very nervous about both procedures. Any words of advice would be appreciated

Marilyn

[gf4life]

Marilyn, I had a much easier time with the biopsy, than with the colonoscopy. Both procedures were fairly easy, but the prep kit for the colonoscopy made me very ill. For me it was the Fleet Phoso-soda drink. It is a laxative with a lot of sodium (6000mg per serving!) and it really bothered me. I threw up for days after the procedure and I still can't drink ANY form of liquid that is salty.

I would guess that the deficiency your doctor is talking about is IgA deficiency. That would be Immunoglobulin A and it would result in your testing false negative on the Celiac tests, since almost all of them are based on testing the levels of antibodies to gluten in the IgA. Here is a really good informative link to IgA deficiency.

Open Original Shared Link

I hope you are able to find out if gluten in one of the problems with your health.

God bless,

Mariann

[Rikki Tikki]

Hi Weebits

I would go ahead and have the biopsy done to see if you have flattening of the villi. The only concern that I can see is that if you are gluten free for a while before you have the test the villi may heal depending on how severe it is.

The thing about the coloncospy is that my dr. did it and I am glad he did. He removed three pre-cancerous lesions so I would also have that done.

Just a suggestion, take care