plumbago

Again, apologies for the earlier comment of mine. I really should not speculate (but I probably will!), however, one thing stood out to me in your original post was that you are trying, it seems, two things at once: B vitamins, probiotics, etc and the gluten free diet. In order to better notice the efficacy (or lack) of any remedy or thing you may try, would it be better to only do one thing at a time? I don’t know, really; i’m just asking. Also, from commenters here on this site, it seems that the effect of a gluten-free diet can really vary. For some, the difference is instantaneous, but for others, it can take months, even years. I'm sure people will start to weigh in soon, and here is where I should not be speculating!. But it does seem like you are having an allergic reaction, and that you might need to start getting very very deliberate, disciplined, and methodical with your diet. Meaning, paring way down: eating, for example, only one or two things exclusively for a few days - just to see. Could it be the salt? Could it be low thyroid? Could it be fructans? I have never heard of this before, but please do stay with us and let us know. Plumbago

Apologies! It was from someone else, not you. I am so sorry. Plumbago

I would be more inclined to help if you could reconcile your post from 7 years ago in which you stated you had been having facial swelling for one year. Plumbago

I would say give it more time, but first a couple of questions: Are you on any medications? Can you say more about the timing of the colon pain? Before or after you eat? Before or after a BM? Now I see that you say it is continuous. Is that really the case, or is it worse at times than others? My hunch is that you are on the right track, as many of your other symptoms have abated. I used to have left sided pain, almost like a flank pain. Occasionally I still get it, and it is very associated with (sorry about this) an impending BM.

"The chills and general aches, and generally feel bad, like the flu.. for two days only." Two days is a long time to be feeling bad! I have only been able to link a flu-like/inflammatory reaction to something I ate that likely had gluten in it a couple of times. But yes, the reaction was a warm feeling like you have when just getting sick, general malaise, some myalgia - usually it was all relieved upon going to the bathroom. What's your temperature during an episode? I'm not sure I understand this sentence you wrote: "if trace gluten usually causes me fatigue and joint/all over pain.. why would it sometimes cause flu like symptoms and sometimes cause fatigue and debilitating pain?" Are those not all symptoms of the flu? Or are you saying the fatigue and pain are not the usual flu symptoms? In either case, I can't explain it, I'm sorry. Others may be able to. I suspect there may not be a textbook answer as all of our guts are different. I second the suggestion above to get tested for Lyme if you suspect you might have it. At that time, hopefully they'll run the standard tests including a complete blood count. Plumbago

In my experience, costochondritis refers to inflammation of the cartilage attaching the ribs to the sternum. I haven't heard of itchiness as a symptom. (Costochondritis seems often to be a catchall for I don't know what you have but it's not a heart attack!) Anyway, have you talked to your doctor about vaccines? Once any lesions dry up, it may still be worth it to get the vaccine. I'm sorry for what you're going through - it sounds awful. I often check in with Dr Andrew Weil. Here's what he has to say about shingles (which he has had): https://www.drweil.com/health-wellness/body-mind-spirit/hair-skin-nails/shingles/ Plumbago

Again, I recommend a hands on assessment to locate the exact source of the pain. It's impossible to know what's going on without it.

Do you suspect it is something psychological? Pediatricians are trained and taught to stop look and listen to a parent who says the child is not her usual self. I'm not as sure about that with GIs, but the doctors should listen if you say, look this is definitely not normal. Ask for a full hands on gastro assessment, if you need to. The days of doctors touching patients to learn need not be over! Get your money's worth.

Hello everyone, Episode 95 of the online general practitioner podcast of the Curbsiders is Food allergy, food intolerance and celiac disease. Give it a listen! Here is the blurb: Separate the wheat from the chaff when it comes to food allergy, food intolerance, and celiac disease. Featuring renowned gastroenterologist and current president of the American Gastroenterological Association, Dr. Sheila Crowe MD FRCPC FACP FACG AGAF, we discuss how to differentiate a food allergy from an intolerance, what diagnostic testing is appropriate, and why fructans might be the real culprit in patients with ‘gluten sensitivity’. http://thecurbsiders.com/show-notes/95-food-allergy-food-intolerance-celiac-disease Plumbago

I'm confused: is this an “open letter” that was penned in 2012? I wonder why it is being datelined this month? “I've already introduced the undernutrition topic, so let's throw in a few million people who are undernourished, and therefore may be immunocompromised but are not at the extremes of the age spectrum.” There are very few people, I would imagine, who are both being tested for celiac and who are undernourished - in the United States. Is he speaking globally? Even there, I would question who would be getting a celiac test before having their malnutrition issues dealt with. “Second, on page 27 of a monograph titled, 21st Century Medicine: A New Model for Medical Education and Practice, by David Jones, MD, Laurie Hofmann, MPH, and Sheila Quinn, the researchers describe the affect that various influences may have on gene expression. “ He’s nitpicking, so I will too! It’s “effect.” (Sorry!) “That statement allows us to question the accepted position of the celiac disease community which clings to the principle that once the celiac genes are turned on, they stay on forever—theoretically at the same level of expression—such that once a patient becomes sensitive to gluten, that patient is forever relegated to a gluten–free diet. “ How tantalizing! So, it’s possible my gene will be turned off?? May we please know more sir? I don’t know what his objections are to characterizing the upper endoscopy as the gold standard, and I’m not going to buy his book to find out! Channeling Kramer from Seinfeld on the moviefone episode: why don’t you just tell us what it is? Plumbago

Here are my answers to your questions, based on my experience. YES Frequent diarrhoea (every 2-3 days) NOT REALLY Urgency to have a BM YES, somewhat frequently - abdominal pain and cramping frequently – my cramping occurred just before a BM. Relieved with BM. Happens less now, but still does occasionally and when it does, I tend to think this may be either diverticulitis (or –otis) or referred pain from the rectal area, but those are basically guesses. NO. Reflux daily NO. Constipation DID NOT NOTICE. Very light bleeding with mucus Go to a gastro, do the celiac panel while you are eating gluten for a number of days or weeks (we would need to check that), if you can stand it, and then get the endoscopy with biopsy. These are recommendations in the event you want a sure answer one way or the other. Otherwise, if you don't have to know for sure, go gluten free, and if your symptoms resolve, great! But, as I'm sure people will tell you, you will need to give going gluten-free a sufficient amount of time (which varies from person to person), but over time, the benefits are there. Plumbago

It sounds like you do have it, but that you’ll just need to wait a little longer to get confirmation. Something similar happened to me - the gastro said that upon visualization it seemed that the diagnosis would come back as celiac disease, but that they’d wait for the biopsy for confirmation. As for why the GI didn’t reach out to dermatology, a couple of reasons - only one of which is cynical :). You can always get a biopsy of a patch later on, if you want. There are other reasons, as far as I know, that you can have flattened villi, but the likeliest is celiac disease. As for why your transglutaminase came back negative, I’m not sure of the timeline of when you were tested as it relates to when you were or were not eating gluten. Could that have had something to do with it? Or, lab error. Can't really say.

OMG. Just OMG.

My guess is that there are precious few tests eligible on the formulary for Medicaid based insurances, unfortunately. Public health clinics don't have their own formularies, as far as I know, but deliver care based (usually) on what the patients' insurance covers. (Public health clinics do eat a large amount of costs not paid by either patient or insurance, but that's neither here nor there.) I think the insurance coverage is dictating doctors' thinking - let me soften that: I fear that it is. And that if she or he could order up any test in the world, celiac panels would be ordered more, and not only that (more paranoia possible here!) but my fear is that insurance is constricting doctors' outside reading and thinking. Medicaid may vary by state, but I'm not sure if, in any case, Celiac gets much love. Plumbago

Yes, I would appeal. I am trying to gauge how often those on Medicaid (and Medicare for that matter) are ordered Celiac tests, because my fear is, it's not often at all. I started a separate thread on the topic, but so far, no replies. I wonder if it's even covered. At any rate, I think it would be a great idea to get some kind of campaign started for better coverage. Plumbago