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to live as a celiac without positive test

Superlad75

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Superlad75 Newbie
Superlad75
Posted

Hi there, it's strange to put into words my health journey, but easier seeing so many of you go before me. I'm in that confusing place of being gluten free for 24 years so unable to get a celiac diagnosis due to the fear of eating gluten for 12 weeks. I do have the celiac gene. Currently my biggest issue is living without a diagnosis and all the rubbish attitudes towards people who are gluten sensitive (also sugar and dairy intolerant too) I eat a strictly gluten free diet but we do share chopping boards, toaster and bread bin. My husband thinks we should live as though I have the diagnosis, as its not such a big deal and why risk the long term health issues. I also have reoccurring mouth ulcers which cause me alot of pain, its a bit like getting a virus every week, with 2 kids and a desire for a fun and healthy life this is seriously disappointing most of the time. I am taking a low dose of amatrptalin which does seem to be taking the edge of the pain, I'm also due to see a clinical psychologist to help with stress, as this seems to be a trigger too. So I guess I'm here because I feel a little lost, where do I go from here without a diagnosis? Does anybody have similar issues with additional intolerances and mouth ulcers? and what do you do about the attitudes of society to those who are in chronic pain but don't have a diagnosis? Sometimes I'm tempted to eat the gluten for 12 weeks despite the probable debilitating symptoms just to know once and for all!

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bartfull Rising Star
bartfull
Posted

Welcome aboard! It sounds very possible that you DO have celiac. And I'm here to tell you that if you're sharing cutting boards, bread bins, and toasters, you ARE getting glutened. I bet you share the same butter, jars of mayo, peanut butter, mustard, etc. Those too are sources of contamination.

I'd be willing to bet these things are the sources of your lingering health problems. Go to the coping section here on the forum and read the Newbie 101 thread. It'll teach you a lot.

As far as being self-diagnosed, many of us are. Some due to lack of insurance, some due to inability to tolerate a gluten challenge, and some due to the ignorance of doctors. I'm one of those without insurance but my doctor gave me the official diagnosis based on genetics, and my resolution of symptoms on the gluten-free diet.

But I don't tell most people that. Friends and family, yes, but folks I don't know that well? I just say something along the lines of, "I haven't been able to eat gluten since I was diagnosed with celiac." I don't mention that it was ME who initially diagnosed myself.

squirmingitch Veteran
squirmingitch
Posted

Ditto what Bartful said. You really DO need to read the Newbie 101.

  • 3 weeks later...
Noobette Apprentice
Noobette
Posted

One of my only symptoms before going gluten-free was painful canker sores in my mouth, which I now get very rarely. I was already gluten-free when I first got sick (I stopped eating gluten because I have the DQ2.5 and DQ8 genes), so was unable to get an official diagnosis. My bloodwork was normal, but my biopsy came back as Marsh 1. I was not willing to put myself through a gluten challenge. It was at that point that I became strict gluten-free; in addition to not eating anything containing gluten, I replaced my cutting boards and cast iron pans and separated stuff in my kitchen. It only takes a few milligrams of gluten to affect your gut for weeks. If you are sharing cutting boards and a toaster, you are experiencing continuous cross-contamination. Try going strict and your mouth sores may be a thing of the past!

shannon79 Newbie
shannon79
Posted

Ugh, the mouth sores. This is one of my symptoms that, oddly, I was actually happy about. No, really...it's an actual physical, viewable THING. "LOOK, doctor--sores in my mouth. All the time."  Not like the ambiguous and easily misdiagnosed fatigue, headaches, depression, etc... So unless I have Munchhausen's and I'm going at the inside of my cheeks with hot pokers weekly there must be a cause for this, right?

Anyway, much more of your post resonated with me...I'm in the diagnosis free limbo, and very conflicted about the " attitudes of society to those who are in chronic pain but don't have a diagnosis" as you so eloquently put it. My biggest fear in continuing to push doctors for a diagnosis is hearing the words "fibromyaligia" or "IBS". I believe neither of these is a true diagnosis, it's what doctors call your symptoms when they don't know what else to say. I'm not trying to offend anyone diagnosed with these things, I don't disbelieve they have symptoms--I'm in the same boat. I just feel like it's a catch-all used by doctors to wash their hands of you. 

 

deb-rn Contributor
deb-rn
Posted

I wasn't positive in the initial test, didn't opt for further testing.  I also have Sjogren's disease.  It is  VERY  common to have both!  THAT  is where my years of mouth sores come from, I believe.  I feel the same way about Fibromyalgia... to me it means you didn't care enough to dig to the bottom to find the root cause!  I'm going to have a whole "syndrome" named after me some day!  I have so many weird things wrong that don't fit into a category and don't show up on blood tests!  It wears you down after 58 yrs, though!

 

Debbie

Swimbikerunceliac Newbie
Swimbikerunceliac
Posted

I had a negative biopsy after only being willing to do a gluten challenge for two weeks but I was positive for HLA DQ 2 and DQ 5, my GI doctor told me I was Celiac just based on my symptoms and positive genetic testing. Is it as pretty of a diagnosis as a positive biopsy, no, but if my GI doc feels comfortable giving me the label then I am fine with it. Honestly with all my symptoms I really do believe I have it. I would just accept that even if you don't have it the fact that you have the gene means that you are high risk to develop it at any point. So you may as well embrace it and fully live that way, it might help the mouth sores.

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    • SamAlvi
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      By SamAlvi · Posted

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    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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