New here. New and frustrated. Can anyone relate?

[foolish_michie]

Hi All - I'm new here and hopefully on my way to a concrete diagnosis.

I'm curious if anyone has found that their flares are triggered or made considerably worse by food. At this point, I react horribly to gluten, corn, soy, white potatoes, tomatoes and yeast. In the case of gluten, it isn't just when I ingest it...it is also when I am in an environment where other people are eating (i.e. being a guest in a gluten house). I don't have celiac (I really thought/hoped I did!).

My reactions seem to follow the same course.
1. Crippling fatigue and brain fog sets in for a few days
2. Then my eyes 'go' (including incredibly annoying nodular episcleritis)
3. Then pain starts around my gallbladder and spreads left. Within 24 hours of the pain starting, I can't stand up straight because my entire abdomen hurts so much. I'm better when I lie/sit still but when upright I'm miserable and often nauseous.
4. My stools run the gamut - from the big D to orange seedy-looking mush to decidedly green mush to flaky greyish, narrow ribbons. After the stools go wild, days of constipation follow. Sigh. Toss in bleeding internal hemorrhoids and feeling like I am ripping apart at the start of a 'go' and the word 'glamorous' definitely does not spring to mind. Oh. And the flatulence. Wow.

In a 'safe' environment (one free of the things that clearly make me sick), I feel 75% better but am still tired and spacy and, wow, such awful pain in my hips and smaller peripheral joints. I'm 45 but when the hips are really bad I walk like I'm 80. And even when I'm feeling better, bright lights in shops like Walmart or Penny's make me exhausted and nauseous.

Sometimes I get a rash but often I don't. I've got vitiligo on my torso, armpit, hands and face. I went through a year of getting constant mouth ulcers but that seems under control now. I think I have had one episode of erythema nodosum that was misdiagnosed as a blood clot. Have dropped a pretty significant amount of weight without trying (35 pounds in the last year).

Last year, my vita D and albumin were too low but I've managed to bring them back up to a healthy range. I have a history of gallbladder problems (which three times led to pancreatitis...years ago); have had two episodes of suspected kidney stones; and went through early menopause. Had an upper endoscopy in my 20s that showed my stomach and esophagus were inflamed and I had a bezoar (ick). My doc kind of shrugged about it all...which pisses me off now that I'm in my 40s and SO miserable.

Does any of this sound familiar to anyone?? I'm really frustrated and starting to get quite depressed. Looking forward to my colonoscopy/endoscopy but, until then, would love a sliver of hope to hold on to.

 

[valleysangel92]

Hello, welcome to the forum..

You say you don't have celiac, is this based on the endoscopy or biopsies or bloods? I was diagnosed purely on bloods after biopsies were negative and there can be many reasons for this. I tested positive on bloods 6 Times and I was 20x the limit of TTG you should have.

If your not coeliac, you can still be gluten intolerant, so it might be worth a trial period of leaving gluten out of your diet to see if that makes a difference. (Although, if you want to have testing for coeliac repeated you have to be eating normally) .

I think you may want to find another doctor who will take more notice of your test results, the inflammation you describe is not normal and needs to be addressed. I would also suggest seeking imaging tests such as an MRI scan and a colonoscopy.

You will find lots of support here and you are not alone. Keep fighting, we're all here for you!

 

[foolish_michie]

I have been a fascist about removing gluten for the last eight months as well as everything else that has put me in agony - to the point that I even make all of my own household and cosmetic products now. It helps a lot but I'm still far from well. Unfortunately, I tested negative on the celiac gene test. Not much arguing with that I'm pretty clearly intolerant though. Tempted fate for the first time since the gene test came back and had a piece of pizza (oh my gosh. soooo good). From joints to eyes to entire digestive system, SUCH a big mistake! I'm going to hang on to the memory of how tasty it was 'cause it is going to be a looooong time before I make that mistake again!

I've just seen a GI I'm not all that happy with. The type of doc who taps on a computer while you talk and never makes eye contact or communicates. Was also COMPLETELY uninterested in things like the eye and joint problems despite how very visible they are right now thanks to the pizza.

Have looked at the doctor recommendations list on this forum and think I will try one of them once the endoscopy and colonoscopy have been done. Such a nice resource!

 

[valleysangel92]

Eeek definitely sounds best to stay off the gluten then! I have coeliac and have been diagnosed 7 years, so feel free to PM me any time if your stuck with recipes .

I can relate to your experience with the GI and I would encourage you to look for someone you are more comfortable with, we deserve to feel confident in these people.

I'm so glad you're finding things useful don't be shy to ask if you think of anything else you need.