7 replies to this topic

[Lexi1989]

Hi guys,

 

I was diagnosed with Celiacs about 2 years ago  and thought I had been doing really well on the diet.

 

However, I haven't been feeling great the last few months - actually feeling sh*thouse* would be a more appropriate term!

 

I am over tired, despite sleeping 9-10 hours a night. Have a foggy brain (I am studying law at uni and simply cannot keep up because I am forgetful, tired and mostly confused), a host of digestive issues (pale coloured stool everyday, constipation and diarrhoea, abdominal pain, and a recurring stomach bug every 3-4 weeks where I get a lot of reflux and vomiting) and weight-loss. I have also been suffering recurring thrush. 

But my most obvious symptom on the outside is the VERY dark circles I now constantly have under my eyes that are purply black in colour and don't disappear no matter how much sleep I have - I have even been told I look like a racoon!

 

Anyway - I finally got so sick of it I went to see the doc - was tested for diabetes, nutrient absorption (iron, b12 etc) - all came back clear. She has now referred me to a dietician.

I am a very healthy 23 yo female - have cut gluten out of my diet in all foods except for the following:

- I dont know how to read food labels for the additives/preservatives/flavourings I am supposed to avoid

- I dont 100% avoid cross contamination (like other people in my house using the toaster with their wheat bread or eating out at restaurants that could have cross contamination)

- I haven't checked my toiletries like body wash and moisturiser for containing gluten. 

 

However, i recently  found I react to quinoa and cut that out, and have found I feel better rather than worse after taking my morning vitamins (a women's multi, and immune defence vitamin, garlic, vit c and horseradish). The all say "no added gluten" but I still seem to not feel that great on them - I stopped taking them for a week and appeared to feel better  but not that significant a difference that it could just be 'all in my head' if you know what I mean.

 

My questions are:

1. Has anyone found it worth wile seeing a dietician? The one I'm referred to is quite expensive and as a struggling uni student I don't want to waste any more $ on doc appointments that get me nowhere. 

 

2. Could my symptoms be related to any other illnesses common in celiacs? I have looked into leaky gut, crohns, candida and diabetes and find my symptoms fit under all of those! 

 

3. Does anyone think that my recent symptoms (over the last 2 mths) are just due to accidental glutening in minor amounts and since I have been on the diet for a while I am just now SUPER sensitive to the slightest amounts of gluten? 

 

I am still quite new to all of this and my original doc (i have a new one now) was not very helpful once I was diagnosed - simply told me to avoid wheat rye and barley and I would be ok!! Most of my info I find on the net or this forum but I am starting to feel a little overwhelmed when I thought I was doing well but realise there are so many more things i need to look out for!!

 

I hope someone can help to put my mind at ease,

 

Thanks.

[shadowicewolf]

1. Up to you. I didn't and i learned how to do so.

 

2. Have you tried cutting out soy or dairy? I'm thinking, however, the big issue here is the fact that you are getting cross contaminated. That could be the source of all your issues right there.

 

3. Funny thing about it is that symptoms do change over time. They can get worse or they can lessen.

 

Go through everything in your diet and lotions/toothpaste/and so on. Make sure they are gluten free. Get your own toaster and hide it if you have to. Learn what companies have clear labeling policies, where they will disclose if an item has gluten in it. Kraft is a good brand that does this for example, there are others as well.

[pricklypear1971]

You are not gluten free if you aren't avoiding cc like toasters. Those tiny bits of gluten are enough to cause an autoimmune reaction.

Don't worry about other diseases, etc. till you master gluten-free. Yes, you can get more sensitive over time. What you're experiencing is not "increased sensitivity". What you're experiencing is an autoimmune reaction because you aren't completely gluten-free. Your body is ticked and is telling you.

It's better to reevaluate what yours doing than deal with a second ai disease . You can do it.

[Lexi1989]

Hi guys,

Thanks for the help - I am new to the forum and astounded by the speed and helpfulness of members on here!

I think you're both right and have sort of told me what I knew deep down - I need to get serious about gluten-free!

As I said - thought I was doing well going from a care-free teen who paid little attention to my diet to thinking about everything I eat. But I am now realising that it simply isnt good enough and need to take it more seriously. 

I think I'll see the dietician so that she can eliminate foods I thought were safe and give me a proper unsafe food list. Living in a sharehouse of young (and sometimes inconsiderate people!) will make the cross contamination issue a little harder but the toaster suggestion is a great idea.

 

I  guess the more I read into this - the more I am astounded at the ripple effects that eating the slightest bit of gluten has on a celiac - I guess its all a learning curve. 

Shadowicewolf: I have cut out dairy, except for the odd sprinkle of cheese on spaghetti etc but will see what the dietician thinks about cutting this out all together. 

 

On a side note - Got my blood test results back from the doc today:

- nutrient absorption was fine (iron, b12, folate etc)

- cholesterol fine

- no diabetes

only thing was that she said my liver good have been better - she said it wasn't overly concerning but a little high? (guessing that means the enzymes detected?)

 

Has anyone else found this before (I am not overweight and hardly drink alcohol).

 

Doc said she will test again in a couple of months. Anyway - having the bloods back normal was actually sorta disheartening because she didnt seem to think there was anything wrong with me but I KNOW i feel crappy! Will keep this post updated. 

 

Oh one last thing - has anyone found a detox helpful to really eliminate gluten? A few of my friends who have embarked on gluten-free diets (not due to celiacs) have started Lame Advertisement - an all natural, gluten-free 30 day detox, and they are feeling amazing. Seeing as I cant get into the dietician for 2 months, thinking it might be worth a shot to cleanse the system. 

 

Cheers guys

[Gemini]

Hi Lexi,

     It sounds like you already know what the problem is here. You need to pay attention to cc and read every label to make sure your food is really gluten-free.  Get your own toaster and be much more careful about eating out....you can't really eat out all that often as a Celiac or you'll just get sick.  Time to tighten up your diet! 

 

A few things....did your doctor run another Celiac panel to check for dietary compliance?  That would be the DGP test.  She ran vitamin panels but it may take a long time before all that cc affects vitamin levels.  The fact that your liver enzymes are a bit elevated could be from the cc, long term, OR it could be a Celiac related liver issue.  She should run a FULL panel because an elevated tTg test (part of the Celiac panel) could mean another AI problem and your liver enzymes are a bit elevated.  That should be scrutinized a bit...a little more blood work seems in order.  It could very well be from all that cc but I would want further blood work to make sure.

 

All of your symptoms, including the pale stool color, seems to scream of gluten ingestion.  People do tend to become more sensitive the longer they are gluten-free but that isn't called super sensitivity...that's what normally happens because once you have cleaned out your body well of all that gluten, you react more strongly to smaller amounts.  You notice it more too because you got used to feeling normal and well. 

 

As far as a dietician is concerned, that is personal choice.  Many can just find reputable books and ask questions on websites and that's a lot cheaper than a dietician.  Or you could do a couple of appointments to get your questions answered and then do your own thing but keep in mind that not all dieticians know the gluten free diet well.  Some people have had bad experiences and others haven't.  That's a tough call.

 

Good luck to you and I hope you feel better soon!

[Nikki2777]

The toaster alone could be getting you.  I don't go crazy at restaurants but there are always crumbs in toasters.  That and lipstick should be your first stops, but yes, you need to get more serious.

[cyclinglady]

Don't just get a new toaster -- HIDE IT!!!!  If you leave it in plain sight, someone will accidentally put wheat toast or a waffle in it. Same goes for other kitchen items like a colander, wooden spoons, etc.    Take a few hours away from your school books and focus on Celiac Disease.  The benefit of taking the time to learn about celiac disease will mean that you'll feel better (physically and mentally).  Your GPA will more than likely increase!

[Ksee]

I agree with Gemini, it sounds like you already identified the problems but only need encouragement to follow your gut (pun intended)

I was saying in another thread, it wasn't hard for me to remove gluten because I already ate whole foods, fruit, vegetables, beans, eggs, dairy, single spices and so taking the grain out was easy. 

Something you can think about is learning how to make your own simple things, then you know what goes into what you eat. You may find problems resolving long before needing to spend precious money on expensive dietary appointments.  

Have you ever mentioned to inconsiderate people how they are contributing to your obvious illness right now? If someone is poisoning you without concern, and let's face it, that wording isn't an exaggeration, knowing might help you decide if there is a healthier place for you to be. Hopefully it's more a problem of youth and ignorance they will gladly help you fix.

Good Luck