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My Diagnosis

Mateto

By Mateto
in Doctors

Recommended Posts

Mateto Enthusiast
Mateto
Posted

So today I went to the doctor to get the results to my bloodwork.

She had the results, only she never had the results to the coeliac test -- which is the main reason I was tested of course.

Then she told me I was bulimic or anorexic, I had to be, because I look like it. It was no use trying to defend myself because she kept saying "umhumm", you know, that sceptical "yeah, whatever" kind. Now I have to get more bloodwork, and spend more time being SICK.

Also, my iron levels are HIGH! Too high infact. Is this common?

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mushroom Proficient
mushroom
Posted

How frustrating! Oh no, I didn't test you for celiac because I don't think you have celiac, I think you are just bulimic or anorexic. Now really, wouldn't you know if you were bulimic? She must obviously just think you are looking for attention. Well, you are, but of the informed kind!!

mamajchis Newbie
mamajchis
Posted

My primary care doc thinks I am a lazyhypochondraic just because he is inept at finding the cause for my very long list of syptoms which are sypmtoms of celiac. I finally did have the bloodwrok done but understand it can give a false reading. Mine came back negative. I went gluten free mon March 19 2012 and have noticed great improvemt in my body na dmostly my mind. The brain fog was so bad I couldn't think straight, couldn't carry on a conversation, loss of memory. Glute free and proud of it.

mamajchis Newbie
mamajchis
Posted

My iron levels, potassium levels, magnesium levels and B12 levels test consistently low. Potassium has been so low at times that it was close to a medical emergency which I could have died from. I take iron, potassium, magnesium and monthly B12 sgots along with a multivitamin and still blood work comes back with deficiencies. Hope my next bloodwork will be much improved.

  • 2 weeks later...
ncallier Newbie
ncallier
Posted

My iron levels, potassium levels, magnesium levels and B12 levels test consistently low. Potassium has been so low at times that it was close to a medical emergency which I could have died from. I take iron, potassium, magnesium and monthly B12 sgots along with a multivitamin and still blood work comes back with deficiencies. Hope my next bloodwork will be much improved.

I hope your blood work is much improved on your next appointment! What just kills me is that even with a definitive celiac diagnosis by both blood work and endoscopy that my dr. didn't suggest any other tests or anything. He even diagnosed dermatitis herpetiformis but refused to prescribe Dapsone or give any other advice. He told me I could see a dermatologist or a dietician if I felt that I needed to??? I now plan to get an appt. with an internist (maybe??) for the vitamin / mineral tests.

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      dermatitis herpetiformis with all grains

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      dermatitis herpetiformis with all grains

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    • Matt13
      Can food allergies like milk and soy flatten villi?

      By Matt13 · Posted

      Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance  on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so refractory is out of the question based on my talk with dr. If Scott is right and there are so many intolerance in food for celiac what is left to eat?? And now histamine? I mean what should i eat? Maybe gastritis is doing all this trouble? Thanks Kind regard    
    • Rogol72
      dermatitis herpetiformis with all grains

      By Rogol72 · Posted

      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
    • trents
      dermatitis herpetiformis with all grains

      By trents · Posted

      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
    • Richardo
      dermatitis herpetiformis with all grains

      By Richardo · Posted

      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      dermatitis herpetiformis with all grains

      By trents · Posted

      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
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