Diagnosis du jour: need advice

Parent Cafe
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<p>Anyone have any experience with Celiac Disease? I think that’s what we’re dealing with.</p>

<p>My son has had wrenching pain for the past two weeks. It started when he was at school, finishing up his exams, 12/16. The pain was excrutiating: all abdominal, but not exactly sure more than that. The health center sent him by ambulance to the ER / hospital, where he stayed for nearly 2 1/2 days. They thought it was kidney stones, but CT and sonogram negated that. We knew it wasn’t appendix, as those came out in 2006. Finally, his internist called it psycho-symatic and sent him home. Still needed lots of pain killers.</p>

<p>The GI doctor didn’t want to talk about possibilities, just more tests. His demeanor was quite different after he spoke to the internist. He recommended a colonoscopy today (Krohn’s is possible, but not likely. Ulcers have been ruled out.) Everything else came back negative, but the doctor who did the procedure said it looked like it could be Celiac Disease, because my son has “unexplained low iron”, a prime symptom. Turns out, this is an autoimmune disease which is also how I became Type I diabetic.</p>

<p>After some research, I think this diagnosis is quite possible. Celiac Disease is an allergy to all things with gluten: wheat/rye/barley.) Any other possibilities come to mind? Now, what’s it like to live with?</p>

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<p>A college kid’s poor diet could account for the low iron; the belly pain could be IBS, irritable bowel syndrome, which can have stress related exacerbations.
The only way to rule out Celiac is the colonoscopy/biopsy.
Wishing your son all the best.</p>

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<p>Respectfully want to add to above - the only way to rule out a gluten sensitivity is to eliminate all gluten for a few days/week. Relying on lab tests is unwise IMO. Have your S eat GF foods and see how he does.</p>

<p>I’d also like to suggest getting some digestive enzymes for him to see if they help during this acute phase.</p>

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<p>I know a few people with celiac. They are all slim, because they need to be extremely careful about what they eat. No pizza and beer. (Beer is from malt, which comes from wheat.) No regular pasta; it’s got to be special pasta, with no wheat. No birthday cake, unless it’s made from rice flour. And so on. </p>

<p>I hope your son doesn’t have it, but if he does, it is certainly not the worst thing in the world.</p>

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<p>This is probably really off the wall, but it happened to a 13 year old I know last weekend…so I will mention it.</p>

<p>Meckel diverticulum - bulge in the small intestine present at birth. It’s a malformation of the GI tract. Estimated 2% of population has it, but it doesn’t cause them a problem. Can cause extreme abdominal pain, rectal bleeding.</p>

<p>The boy I know ended up with a perforated bowel because it caused an obstruction. He had symptoms off and on for a few years, but no one figured it out until last weekend.</p>

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<p>Colonoscopy may show diverticulitis.Treatable with antibiotics. Preferable over celiacs disease. Check it out on web md.</p>

<p>Good luck today to you both.</p>

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<p>limabeans: 16 year old daughter has Celiac; diagnosed at 11 with same symptoms as your son…</p>

<p>1) DO NOT eliminate the gluten in his diet without a diagnosis…eliminating the gluten will screw up the blood tests and give you a false negative if, in fact, he has Celiac</p>

<p>2) Gold standard for diagnosis is the endoscopy but most doctors will blood test first…</p>

<p>3) find a gastoenterologist who is experienced with Celiac…don’t know where you are but every major city and suburb on the East Coast, for example, has a Celiac center based in a major hospital…PM me if you need help with that…</p>

<p>4) according to the research, Celiac is hereditary…apparently one has the gene, but something turns the gene on…noone in our family has the disease other than my daughter but apparently someone passed the gene on to her…</p>

<p>5) this is not a difficult diagnosis; if confirmed, gluten free diet while not a “walk in the park” has gotten infinitely easier over the past 3-4 years…</p>

<p>let me know if you have any other questions…</p>

<p>edit: in terms of going back to school, see if there is a Whole Foods or Wegman’s closeby his school as well as talking to dining services…many have the ability to accomodate and may have other students in his position…</p>

<p>Good luck and let us know…</p>

<p>edit: just noticed what you wrote about being type I diabetic; HUGE association between Celiac disease and diabetes…in fact, many gastros and internists are now cross testing…</p>

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<p>Lactose intolerance can come on suddenly (it did for me) with gas, bloating, and a pain that felt like I had someone cutting me with scissors from the inside on the right side near the appendix. The pain finally went away when I removed all - and I mean even that drop of milk or bit of butter or bread made with whey or anything else that contains whey or is prepared on equipment used to prepare food with milk - all - traces of milk from the diet. I can turn that pain on and off based on milk food. Lactaid (the pill - and the brand - other brands don’t work for me but do for some other folks I know who are lactose intolerant) helps some but not totally.</p>

<p>FWIW - my symptoms are not as extreme as it sounds like your sons are, but it’s something to consider.</p>

<p>Also, DS had a hernia which caused pretty intense pain. They had him drink the gunky stuff and have a scan to diagnose, and surgery soon after. </p>

<p>Also, lactose intolerance can be a side effect of celiac disease - if your intestinal lining is injured, then it is hard for your body to make the lactase (the enzyme produced in the lining of the intestines) that helps digest the lactose (milk sugar that causes the problems). I notice that if I toast bread very completely, really cook the flour so none of it is gummy, my lactose sensitive belly is happier with bread stuffs. For my body the two, lactose and gluten, are def. connected digestively.</p>

<p>And, Crohn’s can also have lactose intolerance as part of the problem. My neighbor has Crohn’s, and when I described my lactose pain to him, he said that is exactly where his Crohn’s pain is, and he went to his doc and asked to be tested for lactose intolerance, and was found to have 0 ability to digest milk. It would have been <strong><em>nice</em></strong> had the doc’s figured this out for him - but they did not. His symptoms decreased after he removed milk from his diet. He did not pursue Celiac - this was a couple decades ago now. At that time my doc actually laughed at me when I said I was lactose intolerant - I figured it out on the brand new internet chat groups, when some folks responded to a post to warn me about vitamin pills, which can be bound with lactose. So watch his pills, too!</p>

<p>Good luck!</p>

<p>Also, celiac is not as difficult to live with these days as it was a mere 10 years ago. You will find a local supermarket with a section filled with appropriate food choices. There are many brands out there now for both lactose and gluten intolerant folks. It’s a challenge, but very handleable once you get the hang of it.</p>

<p>The local elementary school could probably be a good source for you - there a lot of kids now with various food intolerances, and the school nurses have some good info, usually because they hav been educated by parents. I knew one celiac kid who couldn’t touch play doh - there are odd sources of gluten out there, so if your son is found to be celiac, there are some things like that to watch out for. There are also groups around - google for it - lots of info on how to eat well on the web and so forth. </p>

<p>I ran in to some gluten intolerant women shopping a few years ago and they were the ones who told me about the lactose/gluten connection which I then researched on the web. They said it is so much easier these days to find foods. Even some restaurants will be sensitive to your food needs, since there are so many ppl out there with various food related issues.</p>

<p>Good luck!</p>

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<p>There is only one way that I know of to diagnosis celiac disease - endoscopy. They take a biopsy of tissue through the endoscope. It requires anesthesia but is quick and simple day surgery.<br>
Not all wrenching pain is celiac disease.
Before an endoscopy is done usually some other tests (non-invasive) are done first to rule out other causes. My daughter has suffered from non-ulcerative dyspepsia for about 5 years. She has had nearly every GI test that can be given - save for a laparoscopy look-see. They run the gamut from CT scans to Barium swallow, even nuclear medicine studies on digestion speed.
I guess what I am trying to say is be careful of self-diagnosis. Take it one step at a time. You son may be better in a few days or he could be facing a long road ahead.</p>

<p>Hugcheck - I agree with the psychosomatic “diagnosis”. Ugh. I think it’s another name for “laziness”.</p>

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<p>Thinking back ----
when my daughter first presented symptoms at age 14, after a few weeks her pediatrician asked me about “stress”. LOL</p>

<p>I asked for a GI and on the very first visit he told her this was not “in her head”. What a relief.</p>

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<p>You won’t know for a bit just what this is. But if it is celiac disease, it is certainly something that can be handled. Our nephew deals with that. We have all learned some new and interesting ways of cooking (did you know that there is an Italian cake that is traditionally based on arborio rice instead of flour?), and gluten free products are now available in grocery stores. When you think about it, the traditional dinner of meat, veg, potato is gluten free, for example.</p>

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<p>For credible information regarding the diagnosis and treatment of celiac disease, see this NIDDK fact sheet: [Celiac</a> Disease](<a href=“http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/]Celiac”>http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/)</p>

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<p>No knowledge in this area, limabeans, but I do want to offer my sympathies! I hope that you get a diagnosis soon, and that whatever it is is easily treatable! </p>

<p>I hate it when doctors call something psychosomatic because they can’t figure out what it is!</p>

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<p>my nephew had this- I had never heard of it before.
[Abdominal</a> Migraine](<a href=“http://www.healthcentral.com/migraine/types-of-headaches-38002-5.html]Abdominal”>http://www.healthcentral.com/migraine/types-of-headaches-38002-5.html)</p>

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<p>Several members of my family suffer from diverticulosis/itis or IBS or a combo thereof and all have been helped by taking Align and/or eating yogurt. My mom is a huge fan of Activia now because for the first time in her adult life, she is not suffering from debilitating bouts of excruciating stomach pain and Activia is the only thing she has changed. I have told her that cheaper yogurt will do the same thing but she’s devoted to Activia. My D takes Align every day and has had fewer stomach issues.</p>

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<p>Thanks for the vast sources of information and personal anecdotes everyone! You’re great. I called this thread “diagnosis du jour” because that’s been my experience with this kid. He has always had many issues, and I struggle to try to understand them all.</p>

<p>Born a premie, he had significant difficulties socializing as a toddler. It continued of course, but the names of the problems perpetually changed. </p>

<p>Nowadays, one would call it Asperger’s, but before the DSM IV came out, they called it “oppositional defiant disorder” (and behind my back, everyone called it bad parenting). He was only 3 or 4 when our journey really got started, and there they were telling me my son would be a smoker, and swear, and run away! It was horrible. The psychologist we saw even suggested I divorce my husband because we weren’t fit to parent him! And meanwhile, here’s a kid who was scared of his own shadow. Somewhere, one document suggested we “rule out PDD”, but the public school never read that.</p>

<p>Years of speech, therapy, OT, SI, and special schools had us busy investigating his anxiety and depression, his ADD and all sorts of correlating medications. His profile continued to be an enigma, even to me and his brothers. At times quite lucid and chatty, yet other times in la-la land, and unaware of the world around him.</p>

<p>I have recently read there might be a correlation between CD and diabetes (my issue), and even quite possibly between CD and autism. Wouldn’t it be absolutely great if this diagnosis gets us to cut out all gluten products and we even ‘correct’ his Asperger’s issue. I can only hope! </p>

<p>Please keep those ideas coming, because I so appreciate them. Maybe my son has had that diagnosis at one time in his life too. He’s scheduled to have the endoscopy tomorrow.</p>

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<p>its good to get a 2nd diagnosis- some docs- have a hard time thinking out of the box-
when I was about 21 ( and living with my boyfriend- now husband)I kept having symptoms of pregnancy- distended belly- everything- but I wasn’t pregnant-according to pg tests at the OB- he told me to go to a shrink- which I did- but after one visit he said " it is not in your head & I should go to another dr.", which I did, and he found a ovarian cyst the size of a grapefruit.
( not that - that is what your son’s problem is :wink: , but it is good to keep advocating)</p>

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<p>Yes, there is a correlation between Crohn’s Disease and autism. Crohn’s is also considered an auto-immune disorder and it can have a very sudden onset in some people.</p>

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<p>A person can have pretty painful GI pain with wheat allergy alone (different than gluten intolerance). </p>

<p>Allergy tests for food are not conclusive - elimination diets are more reliable. </p>

<p>It is true that you have to keep consuming gluten to test for Celiac, but not having Celiac does not mean that wheat is OK to eat. If you test negative for a wheat allergy, you can still have a wheat allergy. </p>

<p>When people’s GI tracts are depleted as a result of wheat sensitivity, consumption of dairy can be a problem (so it can appear to be a dairy intolerance, when really the culprit is wheat). Soy allergy can produce nasty GI symptoms as well.</p>

<p>It you end up eliminating wheat or gluten, check out:</p>

<p>glutenfree.com</p>

<p>Amazon.com also has gluten-free options which can be shipped to your home, although you need to buy multi-packs. </p>

<p>Whole Foods has frozen sandwich bread and bagels which are delicious. Gluten-Free Pantry, Glutino, and Pamela’s all have a lot of great products. Fred Meyer has a gluten-free section as well. Betty Crocker now makes gluten-free cake, brownie, and cookie mixes that are found at many regular grocery stores.</p>

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<p>I’m so sorry that your son is having such a difficult time, and I hope he gets a diagnosis very soon so the process of treatment can begin.</p>

<p>For his sake, I do hope it’s not Crohn’s Disease, since that can be an extraordinarily difficult disease to live with depending upon severity, and also happens not to be curable. (As someone noted, it’s also an auto-immune disease. Most common in the U.S. among Ashkenazi Jews, for some reason!) The most common age of onset is late teens/early 20’s. I was 22, in my third year of law school, when I first fell ill – a couple of weeks of severe abdominal pain, mostly on the right side, along with diarrhea, bleeding, and fever, finally persuaded me to go to the infirmary, and I ended up spending a couple of weeks in the hospital after being in very critical condition for a while. I’ve been dealing with it ever since. (And, by the way, have never detected any correlation between what I eat and flareups of the disease. Nor do I believe that Crohn’s is “psychosomatic” in the sense that it’s caused by stress, a theory I used to hear from people sometimes 20 or 30 years ago, that’s been pretty much discredited by now.) </p>

<p>Certainly, a colonoscopy would indicate whether your son has Crohn’s or ulcerative colitis, the other inflammatory bowel disease (“IBD”). Not to be confused with IBS (irritable bowel syndrome), which is not believed to be an organic illness from what I know.</p>

<p>In any event, I’m happy that your son hasn’t waited as long as I did to seek medical help! And I wish him the very best of luck, whatever it turns out to be.</p>