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Doctors Unhelpful - Please Help?

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I know there are a lot of posts on here that are asking about help with classifying symptoms, but I really appreciate whatever advice anyone can offer.

I've recently stumbled across the idea of potentially having celiacs or a gluten intolerance through a suggestion from a nutritionist. I've had terrible experience with doctors doing the standard, routine tests and when nothing comes back positive, they take that to be the end of the road and that's the end of it.

The idea of celiacs first came up when I started trying to research probiotics because I have been horribly constipated for the last year or so, with worsening symptoms over the last few months. I've never, ever, as far back as I can remember, had 'regular' bowel movements, but was told throughout my life that 'normal' bowel movements could be as infrequent as 3 times per week for some people, with up to 3 - 5 times a day for others. I would say that for me, a BM 3 times a week was a "good" week, although I never thought to classify myself as constipated. In the last year or so, along with the increasing constipation (painful, straining, unsatisfactory BM, usually hard, small and pellet-like) I've noticed distention of my lower abdomen. I've been eating "clean" and extremely healthy, so this seemed strange to me, but whenever I mentioned it to doctors, I was always dismissed. It's not sooo dramatic, like 6 months pregnant, as I've seen other people post here, but I feel like I look pregnant, like the first stages where you would "show". I've also had issues with bloating, swelling, and strange, excessive amounts of water retention, especially in my face and stomach (I drink 4+ liters of water a day, so this also seems abnormal). Also, last summer I had my third case of intestinal bleeding that was severe enough to result in a small amount of bright red blood in my stool and the water around it. I went to the ER and they performed various tests and sent me to a gastroenterologist. The gastroenterologist performed both a colonoscopy and an endoscopy with "no abnormalities", other than some minor fissures (they weren't looking for anything specific, other than "whatever" caused the bleeding). I had been to the ER twice before for intestinal bleeding with "no apparent cause" as the diagnosis.

When I explained all this to the nutritionist, she suggested magnesium supplements, probioitics, and suggested the possibility of celiacs or a gluten intolerance. I started researching and all of a sudden, a million symptoms/problems that I've had over the years started "clicking" in my brain!

  • chronic constipation/lack of bowel movement
  • bloating
  • distended abdomen
  • migraines
  • anxiety and depression (severe - i have been medicated in the past for depression and possibly bipolar syndrome)
  • chronic fatigue
  • easily bruised
  • frequent stress/hairline fractures
  • constantly sick/poor immune system
  • periodic dizziness/light spots/seeing rainbows
  • chronic low-grade fevers with no apparent cause
  • mono-like symptoms (I have been tested for Epstein-Barr dozens of times...all negative)
  • hot and cold flashes (I have my space heater on in 98 degree weather!)

I have been tested for I don't even know how many diseases (auto immune and otherwise), had MRIs and CAT scans, seen a million specialists. It's so frustrating because my symptoms have always been so vague and non-specific and I have not yet found a doctor who has cared to chase this down until a cause was found.

I started a Gluten-free diet two days ago, since the doctors I have seen (and even been referred to!) have been so unhelpful and unwilling to chase down the cause of my bleeding or other symptoms. Can anyone tell me whether a) I'm justified in thinking I likely have celiacs or a gluten intolerance and b ) what I should do from here?

Any advice would be so appreciated!

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I hope the magnesium and probiotics help. You could also try eliminating dairy; this make help with the C.

Have you ever, in all those tests, had any blood work done for celiac? If not, keep eating gluten just a bit longer and give it one more try. Be sure to get the full panel done. Check the posts here, it is a list of several tests.

You don't have to have these tests done at the docs office, depending on where you live. You can get a full panel at directlabs.com or a similar outfit. I'm throwing this in if you just can not get them to test you.

The tests aren't perfect, but you will have given it your best shot and then you can try the diet. Response to the diet is the best test there is. (And after a few months on the diet, you can try to add dairy back).

good luck

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I also want to stress checking your vitamin D levels. Really important for bone health (and probably really low if your intestines aren't tip top) and those stress fractures sound worrisome :(

I guess you have two options: insist on a celiac test (a panel of blood work and usually a biopsy), for which you must be eatin gluten, or just go gluten-free on your own and see how it goes. The intestinal bleeding and fractures make me think "go to the docs!" but I know how unhelpful they can be, and it can be frustrating to go through all that for negative results... Especially when false negatives are common, and people end up going gluten-free anyway!

I'm on the fence with testing and recently figured out the wheat connection myself after years of chronic pain diagnosed as fibromyalgia. Doctors have done little to help me, but I'm going to hold out for one more doc next week.

It all seems really personal. What you're willing to out up with and how important it is to have a western medicine diagnosis by an MD.

glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.

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