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Vague Symptoms And What Tests To Ask For?


Bojax

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Bojax Newbie

Hi I'm new to the forums. I'm a 20 year old male who has been having digestive/health issues for a couple of years now. My issues definitely involve food in some way if I have a day where I don't feel like eating very much I feel great. I'm having trouble getting a diagnosis because my problems are pretty varied and consistent with food intolerance/celiac's disease/IBS or IBD. My mother has had the same problems that I'm experiencing for most of her adult life, but she's also undiagnosed and has just learned to live with it by avoiding a lot of different foods and by taking probiotics.

My doctors won't listen to me at all I've gone in to my doctor multiple times and once to a GI, but the only test they ran was a CBC even though I've inquired about many others. They seem to want to jump right to a colonoscopy if I head back into the GI which makes no sense to me since they haven't run any of the exclusion tests that rule out celiac's disease or point towards IBS. I plan to find a new family doctor that will run the tests that are necessary any info on what tests I should ask for initially would be greatly appreciated.

I'd like to list my symptoms and maybe someone can tell me if it sounds like I even need to test for Celiac's. It seems like my main problem(s) often change when a new problem appears the old one usually goes away.

~~~

~Random (usually)non-itchy rashes that pop up like hives, but they remain there for days-weeks on my arms, thighs, back, and rarely on buttocks.

~Unexplained coughing similar to a bronchitis cough it will randomly occur for a few hours or an entire day. I've gone through periods of time where it's bad for 2 weeks and then I won't get it again for a few weeks.

~Constant digestive problems *Diarhhea,constipation+occasional fissures, foul smelling stools, abdominal pain (mostly from gas), unpleasant indigestion, sleeping problems, weight gain/loss.

~And my new most recent problem has been going on for the last month. I'm really curious if it could be related to a food intolerance or not? I've had bloodshot eyes for the past 35 days or so that appeared right after my digestive problems started flaring up. My eyes don't itch, water or hurt and my sight seems normal. Eye drops don't help, I'm sleeping for 8-9 hours a night with the help of sleep aids and my eyes are constantly like this at all times during the day/night. My doctor didn't think it was related to my digestive problems, but he's a bumbling idiot who only knows about hemorrhoids when it comes to GI issues.


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mommida Enthusiast

First you have to find a doctor that will listen to you. Check your local Celiac communities for a doctor that is familiar with Celiac. You must continue to eat gluten until the testing is completed. You should have the Celiac blood panel. From there you will need an upper endoscopy with biopsies. Don't you just love how they want to do the colonoscopy for everything all the time?

A person having that much "D" is bound to have vitamin defiencies. As for the blood shot eyes it does seem like an allergic reaction. You should at least be tested for the possiblity.

Keep a food journal to track your possible allergen intake, physical symptoms, and BM type reaction.

GFinDC Veteran

Could be celiac or gluten intolerance, or an allergy. You can check with CSA (celiac sprue association) or GIG (gluten intolerance group) to see if they have local groups who might be able to recommend a doctor. There is also a doctors thread in the Doctors forum here. Lots of doctors don't seem to get the symptoms connection to food.

gf-soph Apprentice

It's a good idea to test for celiac, but I would also get them to check for Crohn's disease. I am non-celiac gluten intolerant and about to go through more testing, looking especially for early stage crohn's. My new gastro has said that in young people the blood tests can come out normal, but you can sometimes see things using the colonoscopy. The fissures and eye problems are what makes me think of crohns in particular. I haven't had the eye problems, but i do remember seeing some sort of eye problem as a less common side effect.

If you post the area where you live you may find someone who can recommend a dr who knows their stuff.

Bojax Newbie

I live in Grand Rapids, MI it's a pretty big city so I'd imagine that there's plenty of doctors knowledgeable on the subject here.

I've thought about an IBD being a possibility for my problems, but it really seems like a food allergy or intolerance. I have specific trigger foods that seem to set me off pretty badly, but I've read that you can have a reaction hours later or a day later so I can't be positive of what my problem is.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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