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Is Diagnosis Necessary?
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14 posts in this topic

Hi all, I am very new to this site as well as the celiac and gluten-free world. I have not been "officially" diagnosed. Apparently a diagnosis can be very hard to get. I have had the worst symptoms since last March following the birth of my second child. I have been seeing a gastroenterologist. I've had an endoscopy, colonoscopy, ultrasound, small bowel follow through all completed. All results within "normal" ranges. What gives? I've had what I've called IBS since childhood. My symptoms that have become extremely evident over the past year are as follows:

Diarrhea

Vomiting

Abdominal pain/cramping

Extreme bloating

Excessive gas

Geographic tongue

Headaches

Fatigue

Chipping/cracked teeth

Psoriasis on my hands and upper thighs

Intestinal sloughing

I've had most of these symptoms for a long time but they have all become part of my daily life in the past year. My PCP is clueless. He is very kind but just wants to write prescriptions for anything under the sun to mask the symptoms. He gets upset when I don't fill the prescriptions. I don't want to cover up what is going on, I want it solved and treated properly. I don't think there is anyone in my family with celiac disease so my doctor is quick to throw it out the window because he says it is hereditary. During the colonoscopy they did do a biopsy for celiac sprue(sp?) but that came back normal as well. I can't live like this any longer. I have been so down and out. I have two young children and I never intended on parenting from the couch! So upon doing my own online research and reading about celiac disease, I decided to give gluten-free a try. Within 24 hours the bloating and stomach pain vanished! Within 48-72 hours I was feeling like a whole new woman. I seriously have not felt this good in a loooong time! Now, I'm only on day 8 of my gluten-free experiment but I can't believe how good I feel. I'm being super vigilant about what I put in my mouth. I've also been keeping a food journal to show my doctor. My PCP told me to go with my gut (no pun intended lol) and follow the gluten-free diet to see what happens. I understand now further testing wouldn't have true results because I am no longer eating gluten.

My question to all you seasoned celiacs or parents/family/friends of such: What would you recommend I do next? And is an official diagnosis necessary? If I feel better and symptom free following a gluten-free lifestyle, is that good enough? At the end of a certain time, a month or 6 week+ gluten-free, should I reintroduce gluten to see what happens? Please let me know what you all think, I'm open to any and all advice. Thank you so much!

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If you were to have the blood work drawn in the next day or two you may still get a positive result. If you wait until two weeks gluten-free you are less likely to get an accurate result. If you resume eating gluten now and have the test later, you will know. I know that you may not want to do this and I understand. However, whether or not you get the diagnosis is up to you entirely. If you know that gluten causes you problems then you know that you should not eat it. Be aware that if you go back to eating gluten after some time off it, your symptoms are likely to be more severe. You might get away with it if you resumed now - or you might not.

Your other course of action, as you say, is to remain gluten free and then do a gluten challenge. If your PCP is on board with this plan, and you can show him your food and symptom diary, will he be willing to diagnose you on the basis of symptoms and positive response to the diet? That is, if you feel you need the diagnosis. Because no one needs a diagnosis to eat gluten free, nor a doctor's prescription. There are situations when it comes in handy, such as if you are hospitalized and need a gluten free diet provided. The medical profession tends to frown on self diagnoses and trust only what they have seen with their own eyes :unsure: For example, I once consulted an orthopedist to whom I took my records and x-rays of a foot fracture, and he stated in his report, "She apparently sustained a fracture...." :lol:

Incidently, I am 'undiagnosed' and suffer from psoriatic arthritis.

Your symptoms certainly sound like celiac, or at the very least non-celiac gluten intolerance; it really doesn't matter which in the long scheme of things because the 'cure' of the gluten free diet is the same. Until research catches up, the only difference it would make at this time is that celiac is genetic and we are not quite sure if gluten intolerance is or not. But either way you should watch for symptoms in your children.

Welcome to the board and best wishes in deciding a course of action.

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I am also undiagnosed. I too have PsA. I am gluten, dairy, soy, peanut, sulphite free. I eat very little sugar, lower carb, and there are many food items I can have on a very minimal basis. My youngest son had very loose stools after moving onto dairy and solids. I did an Enterolab and had him tested for Celiac. Celiac came back negative Enterolab had positive gluten reaction. His Pediatrician says he just has toddler diarrhea and I got in contact with an MD who practices Functional Medicine and he totally pushes a gluten free diet for my son (which I am doing). So even though he isn't diagnosed I am not taking chances especially after my roller coster ride dealing with AI issues for much of my life. I am no longer on medication and that is enough proof for me. BTW, my GP said diet had nothing to do with my condition. Shakes head.

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As a parent, a downside of not being diagnosed is that docs won't take it as seriously in your kids. But that doesn't mean they can't get proper diagnoses if necessary. As an adult, there isn't a lot of *need* for a diagnosis, particularly if you feel comfortable sticking to the diet without someone else giving you a "formal statement" that you have celiac.

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I'm hopeful a diagnosis will mean something for an adult in the future. It apparently doesn't mean much to nursing homes and hospitals right now. But maybe in a few years, they will be required to feed patients based on a diagnosis.

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Since you already have had the innards examined, maybe go quickly as possible, insist on having someone draw blood to run the celiac panel, and call it a day. If the results of the blood test shows up negative, so be it, call it gluten intolerance, and stay gluten free. You're done. You've tried. You can get a genetic test, but that just shows whether or not you are in the 30% of the population which carries the genes which are the most common to those who do develop celiac - that's not a slam dunk, either. Yes, it's hereditary, but most people with the gene(s) DQ2 and DQ8 still don't develop celiac (yet.... who knows what will happen in the future). But those who do develop celiac are very likely to have one or both of those genes.

Unless you also had neurological symptoms, if that is bad enough, if you persevere through several years, several different doctors and insurance plans, you might finally get a brain scan showing damage - but that doesn't mean the doctor will acknowledge it as celiac damage. So you are sort of left out there by yourself with your ability to research and match symptoms, unless your doctor is pretty cool, and fascinated when you tell him about this and he sees the scan results. :) Perhaps no "official" diagnosis, but an unofficial one. Your doctor did say to "follow your gut." Or your rash may turn out to be DH, which can be confirmed with a skin biopsy, and that usually gives a celiac diagnosis.

For the future, you report back to the doc that the gluten free really helps, then you can go about being a "gluten intolerant." Sometimes one just has to be a trend setter. ;)

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Thank you all for your input! I am definitely going for the blood panel! ASAP. This board is so helpful, I'm amazed. Thank you.

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biopsy during a colonoscopy is NOT for celiac. Hopefully it was done during the endoscopy?

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I was about to start a new topic on, basically, this topic, so I hope the OP won't mind if I ask my question here too. My husband went gluten-free several years ago before either of us knew anything about celiac disease except that it existed and that the only cure was being completely gluten-free. We didn't know that it would be almost impossible to get a diagnosis once he was gluten-free.

I think a clued-in doctor would probably concur with our diagnosis because he has/had so many of the classic symptoms (including iron deficiency, short stature, dental enamel damage, mouth ulcers, mysterious skin rashes, in addition to GI symptoms, depression, fatigue, etc) AND most of all, because celiac disease runs in his family. But as you all know, it's basically impossible to get an official diagnosis without the dreaded "gluten challenge" --which he simple cannot and will not do --even very minute amounts of gluten make him sick for days now, so the idea of eating gluten for 3 months or whatever is totally out of the question.

I see some of you are saying that a diagnosis isn't necessary for an adult, but I feel like he isn't getting proper follow-up care without a diagnosis --testing for related conditions, etc. What would you all recommend? I should add that the various GPs, etc he's consulted over the years (and even one GI specialist) were completely unhelpful, despite being in two European countries where celiac is very common.

thanks for any ideas!!

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Some are great believers in follow-up care for celiacs; others not so much. I guess I belong in the not-so-much category. So long as you make sure to keep up your Vit.D and other nutrient levels (because some of us remain to a degree malabsorbers) and are sure you are adhering to a gluten free diet, there is really not a lot of follow-up needed. For most, the risk of acquiring other autoimmune diseases or bowel cancer retreats to the levels of the rest of the population after 5-10 years gluten free. You should of course stay alert but there is not really much else that a doctor is going to look for except compliance with the diet by blood tests. It is rather like me as a former smoker; I am aware that I do still have a greater potential for lung cancer even though my smoking days are so far back in my past I barely remember them - only the agony of quitting :D So a "glassy" spot they found on my lung needs following up next month; but I don't consider myself at greater risk for anything else because of smoking.

But how much follow-up care we need is a decision we all have to make for ourselves. I am sure others will weigh in with their opinions.

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I am new to the site as well and am undiagnosed. I have similar symptoms which most people tend to blow off and think it's all in my head which really aggravates me. I too feel better on a gluten free diet! My bloodwork came back showing everything was normal. I'm just going to stick with the forum here, read as much as I can and learn more about it, and try to continue a gluten free diet so long as it makes me feel better. Good luck and stick to what makes you feel good. That's what I am doing.

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I'm new to all this too. I have had stomach issues for about 4 years, though, and thought it was my gallbladder. Everyone keeps saying the pain from the gallbladder is upper right quadrant, though, and mine seems to start on the left side of my body. It's almost as if a balloon blows up in my stomach and tries to continue to blow up. Sometimes if I catch it early enough with GasX and lots of water, I don't have tremendous pain, but yesterday i had a really bad bout that kept getting better and worse. I took a Vicodin which seems to help the pain and it took the edge off enough for me to think that was the end of it. But, oh no. I ate a slice of sourdough bread and the pain returned...with a vengeance! That's what got me to thinking that it might be a gluten intolerance. I haven't been diagnosed because I don't have insurance nor money to go the dr route. I went about 3 years ago to a gastroenterologist and he did some liver enzyme tests and told me that the next time I came in, he'd have to do other tests. So, I didn't do anything and I keep having these horrible stomach issues about once every month or two. Since I thought it was gallbladder, I cut out red meat and fried foods, but that apparently hasn't helped since I had the pain yesterday. Do you know of anyone else who thought the pain might be gallbladder?

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Hi Kitty,

Several members (or more) have had their gall bladders removed. Seems to me like gall bladder issues are one of the side affects for some celiacs who aren't gluten-free yet. I have had pain in my left side in the past, not gall bladder though. My pain took about 9 months to go away after going gluten-free.

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To Kitty, many of our posters have had their gallbladders removed before they ever get to the diagnosis of celiac, with no relief. Many others have experienced improvement in the condition of their gallbladders after going gluten free. Yet others find that their supposed gallbladder pain is not really that at all. Do not be in a big rush to attribute your problems to your gallbladder. :)

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