A Year In And Still Confused - Please Help

[nomorepies]

Hi everyone,

 

I have come here to post out of sheer frustration with the lack of improvement in my condition, and I have rarely been able to find anyone with a story like mine (though I perhaps have been looking too hard).

 

A bit of backstory:

 

• Male, 183cm (6 foot) 70kg (155lbs) 24 years old
• Glandular fever age 22. Severe fatigue followed, never fully dissipated
• Age 23 - severe fatigue, depression. Over 10+ trips to the doctor before being referred to a specialist. I had some irregular bowel movements - mostly uncomfortable while passing stools, they were often very thin and unsatisfying (if that makes sense) to get out of my system. But probably only one instance of diarrhea, no instances of constipation. 
• Only trigger was that a blood test indicated I had low ferritin stores (iron) and facial dermatitis
• Diagnosed with Celiac via anti tTG blood test. Specialist informed me of 90%+ certainty of diagnoses, especially considering the other symptoms and low iron in a young male
• Age 24 - symptoms of fatigue had not been releived. Went to a gastroenterologist.
• Colonoscopy revealed certain Celiac diagnosis. Complete villous atrophy - i.e. as bad as it can get.
• I had been gluten free for the large part of 9 months by this point and expected some improvement

 

It has been another couple of months since that doctors visit now. I still feel terrible on a daily basis. I used to be a sharp, intelligent person and I feel as though I have had years of my life stolen from me by this condition. I am just coming to you guys to get some further information or to see if anyone has experienced anything similar.

 

I have been gluten free, to the best of my ability, for 12 months now. I did consciously lapse for a 2 week period when I was in Japan travelling, simply because I just thought it was too hard to figure out what did and what did not have gluten in it, so I just decided to take a holiday as it were. This had pretty disastrous results, again uncomfortable bowel movements but just thinner than usual and more unsatisfying, and also facial dermatitis and fatigue worsened. Colonoscopy was probably 3 months after this trip.

The only thing I can think of that would affect me would be eating out and having things like corn tacos prepared on the same surface as flour ones, getting toast that has been in the same toaster as non-gluten-free toast, etc. I have only one toaster at home because I figured that 1-2 bread crumbs wouldn't make a huge difference - though I might be wrong.

The thing I am finding extremely hard to do is determine when I have had gluten. I don't know how I am going wrong here because my predominant symptom is fatigue, and I don't have any immediate discomfort. Don't get me wrong, my bowel movements are very rarely 'normal', but they seem to be just 'kinda bad' every day, and on the days in japan I did have beer and ramen etc, they were 'pretty bad'. I wasn't like immediately sick.

I just don't know what else to cut out. Am I doing something wrong? Do I need to buy my own toaster, eat in for all meals for a couple of months and hunker down? Or do I need to go on a low FODMAPS diet and give that a try in case I just have IBD as well? I have lost 3 years of my youth to this brain fog and fatigue, and I am at the point of losing career momentum because I cannot function at full capacity.

I hope that someone will be able to help as I am just overwhelmed at the moment. 

 

Thank you for reading this - if you want further info I am happy to provide. 

 

[kareng]

It doesn't sound like you have really been gluten free.  I think maybe you should give a strict gluten free diet a chance for a few months.  That means no shared toasters or jams or PB or other condiment jars.  Stop eating out for a few months.  Maybe read the Neebie thread to see what else you may have missed.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[frieze]

yup, it would appear you haven't been gluten free.  no eating out, no shared common food containers etc.  yes a few bread crumbs, esp. on top of other exposure, can be enough to be  a problem.  good luck.

[MycasMommy]

I concur, even when you thought you were being gluten free, it seems you probably were not. One of the best things you can do is follow the directions to the letter of getting gluten out of your kitchen (from pans to cutting boards to toasters)  I know there are some great "how to" links out there for that. 2nd read EVERY label. not just that but learn all the different forms and other names of wheat/barley/rye products so you can identify them.  For the longest time I did not realize why I was getting so ill from SOY SAUCE!!!  3rd... sad as it is.. do not eat out. DO NOT DO IT.  When you get these things under control, you SHOULD begin to feel better. But you cannot mess up, you cannot take a cavation, you cannot say "oh just for today" and it will take up to a year or even more to get better, Especially since your damage is so severe. This is a hard learning curve, but once you finally master it, it actually becomes easy and second hand nature. so it will be hard at first and you will think "how can I do this the rest of my life?"  but I promise it will get so much easy with a bit of practice. Just breathe, and start again.  You can do this and you will be so happy you did.

[nvsmom]

I agree. It could be those crumbs that are keeping you feeling poorly.

 

A year ago, I accidentally bought my kids some frozen french fries that had some wheat flour on them (in the spices I assume).  I was clueless and ate a few (2-4) every few days when we had them.  I slowly started to feel not right, not horrible like I would if I drank a beer or ate bread, but not well.  I grew tired, got headaches, had minor stomach aches and such. 

 

I mention this story to show how less than a crumb can impact a celiac's health.  I was eating wheat on 3 fries once a week and it impacted me.  Crumbs from the toaster, shared butter or jam, or in the utensil drawaer may be making you sick.  Recheck stuff like soy sauce; shampoos, soaps and toothpaste (if it can get in your mouth); barbque sauces and even the barbque grill could have gluten stuck to it.  Being extremely strict will pay off when you start feeling better.

 

You also might want to have labs run.  Redo the celiac tests to make sure your numbers are coming down.  Check you nutrient levels. Celiacs often are low in B12, A, D, K, Fe, Mg, Ca, ferritin,, Cu, and zinc.  Make sure you aren't anemic - a very common celiac symptom, and one that is slow to change.  You may also want to check your thyroid; hypothyroidism can caus many celiac disease like symptoms.  Check your TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of the lab's normal reference range), and TPO Ab.

 

Keeping a food and symptom journal can help you find other food sensitivities or missed gluten.  Just remember that symptoms can appear within minutes to a couple of days later.

 

Good luck.  I hope you feel better soon.

[RMJ]

You could ask to have your anti tTG blood test repeated. If still positive, it is likely you are still eating enough gluten to cause your symptoms (and I agree with the others, based on your description of what you eat it sounds like you are getting gluten contamination). If negative, you might need to look for another cause.

I have not eaten foods with gluten-containing ingredients for over 2 years and my blood tests are better but still aren't all normal. I don't have GI symptoms so It is hard to know exactly where the gluten contamination is coming from in my shared kitchen. I must be reacting to basically "invisible" amounts.

[notme]

many celiacs have a delayed reaction to gluten exposure, so the fact that your symptoms didn't appear until later is common.  i don't have a full-on reaction until 24-48 hours after i've had gluten introduced to my body.  don't forget:  this is a systemic disease, as in that it will cause a full body reaction and mess up everything with inflammation.  i don't know how long your symptoms last (i bet you don't either, because you haven't been doing this properly) but it takes 14 days to clear my system up to where i am back to 'normal' and feeling better.  read the newbie thread.  there is alot more to this diet than eating off the gluten free menu.  it's hard, but it will get easier.  and you will feel so much better!!  stop fooling with it and own it.  you can and you must  

[sunny2012]

I agree that you are not 100% gluten free. Tiny bits can make us sick.

 

I was getting sick from walking in to purchase coffee in a famous doughnut chain. Then I realized breathing in the micronized flour floating in the air of an environment where so much flour is mixed might be causing it. Now a fellow worker goes in to collect the coffee.

[ezgoindude]

Another dude in the house, sup mang!

 

Not like I'd wanna curse you or anything, but being a guy with a gut problem my friends think I'm a wuss, IF THEY ONLY KNEW, ha.

 

Anyways, I know it's not the answer you're gonna wanna hear, but maybe your answer is all of the above?

 

I'm not confirmed with celiac but inflammation and food intolerance is present, but i'll tell ya, I borrowed my buddies blender to make my smoothies once and three days later I was stuck in the toliet all night.  My friends dietary supplements are loaded with dairy and gluten, both to my stomach is a big no.

 

In fact I'm currently in an extreme elimination diet of my own,  I'm barely holding steady in terms of health and thats AFTER cutting out dairy,soy,gluten, all grains (rice,corn,etc) and all legumes.  My current battle may be from too much fat intake.  I've been a university lab rat for almost 2 years now, and they've barely scratched the surface on how to direct my recovery process.

 

The only thing I could say for right now is to not make any rash decisions from your doctors in terms of getting you on over the counter perscriptions.  Like everyone else is saying, its gonna be a huge pain in the @$$ but I would try REALLY hard in watching what you eat and where it comes from, etc.  oh yeah and low fodmap has helped me a little, especially making sure food is cooked vs. raw seems to make a noticeable difference.

[nomorepies]

Thank you all - so good to get so many responses. I will definitely get stricter and it's good to know other people have delayed reactions etc. I will post back once I've had another month or two and hopefully things are better.

 

Thanks so much, means a lot

[athomp34]

I agree with the others that the biggest reason you aren't feeling better is because it sounds like you are not really eating gluten-free. I was shocked at how sensitive I am. It's definitely an adjustment but it does become second nature eventually. 

I also wanted to add that taking a mulit-vitamin made a difference for me in terms of fatigue (I've been gluten-free/DF for 2 years now but still had fatigue until about 6 months ago when I started the vitamins). Finding a good gluten-free one can be tricky but is well worth the effort in my personal experience. With all the damage and malabsorption that celiac causes it makes sense that our bodies need a little extra help-especially if you are newly diagnosed.

[Bobbie Jo]

I'm just sorry for all of your pain. I have a gluten-free son to feed and I worry about him being on his own in a few years. It's not easy!

He fills up with lots of gluten free oats with milk every day!!! I know- not THE best, but he gets so hungry and wants something quick.

Praying for you. You can get through this.

[Bobbie Jo]

BTW, for your pie cravings, crumble up a bag of any gluten free cookies real good. Mix them up with a couple tablespoons of melted butter and put it in the bottom of a pie plate. Save a little of it for a topping. Put in your favorite filling if you don't mind the canned or boxed kind, then add the remaining crumbles... Maybe add whipped cream on top.

[w8in4dave]

I have 0 energy , The Dr. took blood to look for D levels, Iron levels and Folic acid levels. My folic Acid was low. I have to say after taking Folic acid for a few days I felt so much better. Not as good as I could feel but , better than I felt before. You know they have sleeves you can get for your bread in the toaster. I would seriously tighten up your diet.  You know deep down thats probably the answer to your problems.