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Afraid of testing due to work, etc. Need advice please!

ihateusernames

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ihateusernames Newbie
ihateusernames
Posted

Hi,

I have been gluten-free for about 3.5 years (actually... to the day) after doing an elimination diet and feeling a lot better without gluten. However I have never been tested for celiac because I didn't even realize, when I started, how the process worked. This has led to people assuming I don't have celiac (which I really might not) and assuming "oh it's not that bad..." etc. I think I have kind of internalized this because I am not too careful. I will check labels but only check the ingredients, not whether it is certified gluten-free etc. And at restaurants oftentimes I will assume without checking with the wait staff (I have gotten fairly good at this, but you really never know).

Right now I am just questioning everything. I was pretty tipsy last night and ate a cookie that was not gluten free, I don't even know why. I feel like I don't "believe" it's a problem for me because I don't have a doctor diagnosis or anything. I slept literally 14 hours and woke up in this horrible haze. I feel like I am sort of just dreaming but also about to have a panic attack at any point. Feeling really down but also just confused. I really hate brain fog like this. 

I feel like I just cannot go on like this. But I am so scared to do a 6+ week trial of gluten to even get a diagnosis. I am starting a new job next Monday and I need to get my s$#& together and stop self-sabotaging, but I struggle with having to be so vigilant if I don't know if I just have an intolerance or whether eating a minuscule amount of gluten could really hurt me. It seems like an unnecessary amount of work if I don't know. But at the same time, I am still having some health problems on my mostly-gluten free diet that seem like they could be connected.

Sorry I don't know what the point of this is. My brain is so fried/scattered right now that I don't even know what I'm saying. Basically: Has anyone been in a situation where you had to eat gluten to get tested after already being gluten-free? How did that work out? I cannot imagine going to work with the depression/anxiety and brain fog (the GI issues aren't bad in comparison). But I'm not in a place where I can take that time off work -- even though it is important for my health. 

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cyclinglady Grand Master
cyclinglady
Posted
7 hours ago, ihateusernames said:

Hi,

I have been gluten-free for about 3.5 years (actually... to the day) after doing an elimination diet and feeling a lot better without gluten. However I have never been tested for celiac because I didn't even realize, when I started, how the process worked. This has led to people assuming I don't have celiac (which I really might not) and assuming "oh it's not that bad..." etc. I think I have kind of internalized this because I am not too careful. I will check labels but only check the ingredients, not whether it is certified gluten-free etc. And at restaurants oftentimes I will assume without checking with the wait staff (I have gotten fairly good at this, but you really never know).

Right now I am just questioning everything. I was pretty tipsy last night and ate a cookie that was not gluten free, I don't even know why. I feel like I don't "believe" it's a problem for me because I don't have a doctor diagnosis or anything. I slept literally 14 hours and woke up in this horrible haze. I feel like I am sort of just dreaming but also about to have a panic attack at any point. Feeling really down but also just confused. I really hate brain fog like this. 

I feel like I just cannot go on like this. But I am so scared to do a 6+ week trial of gluten to even get a diagnosis. I am starting a new job next Monday and I need to get my s$#& together and stop self-sabotaging, but I struggle with having to be so vigilant if I don't know if I just have an intolerance or whether eating a minuscule amount of gluten could really hurt me. It seems like an unnecessary amount of work if I don't know. But at the same time, I am still having some health problems on my mostly-gluten free diet that seem like they could be connected.

Sorry I don't know what the point of this is. My brain is so fried/scattered right now that I don't even know what I'm saying. Basically: Has anyone been in a situation where you had to eat gluten to get tested after already being gluten-free? How did that work out? I cannot imagine going to work with the depression/anxiety and brain fog (the GI issues aren't bad in comparison). But I'm not in a place where I can take that time off work -- even though it is important for my health. 

Welcome to the forum!

A gluten challenge can be very, very tough.  It sounds like you have a lot of your plate right now.  Consider just maintaining a gluten-free diet until you have the opportunity to do the challenge.  

You  can decide to stick to the diet.  It can be done.  While I am diagnosed with celiac disease (four years), my hubby went Gluten Free per the rather poor advice of my allergist and his GP 16 years ago.    It worked.  It was a struggle the first year, but he realized that gluten made him ill.  He would love to do a challenge, but we need him to function.  We like paying our bills!  

He will say that I have received way more support from family, friends and medical.  However, he feels that feeling healthy is priceless.  He never cheats.  He takes few risks.  No one would stick to a gluten free diet for 16 years if he didn't think it was beneficial.  

Only you can decide what is best for you.  I wish you well.  

BlackShoesBlackSocks Enthusiast
BlackShoesBlackSocks
Posted

well, we're in sort of similar positions but can l ask what made you go gluten-free 3 years ago?

 

You've kept the diet for quite some time so where the health problems serious? at the time was seeking testing not an option?

For myself, l absolutely tried everything to gain weight after losing January 2017. By April/May l started wondering how on earth l could be eating : regular meals, Boost shakes, fast food and sodas and candy all day, pretty much daily and still be losing. Some of these meals at home were pasta packed which, at the time l really thought goulash and cans of chef Boyardeee would help me gain :P 

 

And years of headaches, brain fog that l didnt know what to attribute to but never suspected celiac until the weight loss, and legs and feet that hurt constantly (l didnt really know this could be due to gluten but it relived after being gluten free).

 

l am only about 2 months in, l did take a really basic TTG ia test after getting a response that my GI would test ''at some point'' and not being clear when that was, and very tired of being 97 pounds and scared of losing more!

 

so l now also have to wait to be tested more extensively, but l have gained some weight  and gave noticed some changes. 

 

Did you have any improvements after going gluten free? If the test l did take had just been a clear ''no'', l dont  know how motivated l would have been to do this. It wasn't a clear yes, either, but designed like a drug or pregnancy test so the weak red line  does signify at least some sensitivity.

 

Typically the longer you wait, if in fact you are sensitive or even have celiac disease, the harder the challenge may be so l can understand the anxiety. l am planning for about 6 months. l could not handle going back on a gluten containing diet with my current job as well, and especially not during holiday retail season!

 

l would start very slowly. Is your new job going to be stressful? You might want to get a feel for the environment first and how you're going to deal with it on days when you might be feeling like utter crap >.> A headache that feels like a band around the back of my head and eye pressure was something l dealt with on my bad days before being gluten-free. It's not easy to function and when l did, l wasnt a nice person or very efficient.

 

You can start slowly, and please font be too concerned about fitting all of your challenge into six weeks, IMO. l wouldnt think of it as just a short term binge. Yes, you want to get it over with, but if you really fall apart and dont think you can even consume gluten daily, maybe try to do what you are able to do and if the time period gets stretched to 8 weeks or maybe more don't panic.

 

it should be difficult at first and even a shock to your system, but  even though you will likely not feel well the entire time you're challenging to retest, maybe by a few weeks in the symptoms will be slightly less severe and you can find ways to ease them. Any meds that you have taken like nsaids, a steroid, even Flonase helped me but l really dislike the side effects.

 

If the process in general with doctors and asking about this also gives you anxiety l would really recommend the walkinlabs recommended here. After 6-8 weeks, order (around 300 so plan for it financially). That will be your answer, make sure you have truly waited enough time to be properly tested and order the most extensive tests. 

 

It's not something you want to have to repeat but l know l am not looking forward to it either! You will have your answer though, which, even if negative will be satisfying.

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