My Gluten Challange

[dbva]

Hello everyone. After two years of being gluten free, I have decided to do the gluten challange to get tested. Here's my story...

 

My mom had celiac, however no other family members have been diagnosed. A couple years ago a coworker and friend was having major stomach pains, and after spending thousands at the doctor was unable to come to any conclusions. He opened up and described all of his symptoms, which sounded very familiar to what my mom had described. I had never had stomach or GI problems, so I never thought it could have been a problem for me...until I pulled up a list of symptoms to share with my friend. I then realized I had several symptoms including fatigue, inablity to gain weight, occasional soreness in joints, and dental problems (which I had blamed on years of soda consumption).

 

I decided to go ahead and try the elimination diet to see if it helped, as well as to help support my friend who decided to do the same. We both went on a strict gluten free diet, with the aid of my mother who knew the safe foods to eat and about all of the hidden ingredients to avoid. Within just a few days my friends pain had completely stopped and he was feeling much better overall. Since I hadn't experienced those problems, I didn't really notice much of a change, but was eating much better than my prior diet which had a lot of processed foods, and I was bad about eating my veggies, etc...

 

I continued on the diet for a month as suggested before introducing it back into my diet. When I did I had quite a reaction, and this included lower abdominal pain as well as the symptoms I had felt before. I wanted to sleep a lot and felt like I had the flu! I figured that gluten must have been the issue and went back to the gluten free diet, and have been on it ever since. I felt pretty good, but would still experience fatigue, and actually lost weight recently.

 

I decided, after speaking with my doctor, to give it another try, and if I can tolerate the symptoms for the 12 weeks, to get tested to confirm if it's celiac, or an intolerance...here's how that has gone so far, leading me to wonder if it has actually been the problem.

 

I started on Friday (6/5/15) Which coincidently was national doughnut day. As this was probably the thing I had missed the most, I ate one doughnut after lunch as to not go too crazy with my intake of gluten to start off. I wanted to time this so any affects would hit me after work and into the weekend, so I didn't have to work if I found it intolerable. That evening I did experience a little brain fog, but felt fine otherwise. I was expecting the worst when I woke up Saturday, however I felt rather normal, just had some muscle soreness, however that has been pretty normal as I have a rather physical job. The brain fog seemed to be gone.

 

I had also noticed my appitite seemed much better than it had been, almost insatiable! For lunch on Saturday I went with a small pizza for my daily gluten intake, and had a sandwich on wheat bread a couple hours later as my appitite was still huge! I felt good the rest of the day, just had the insatiable appitite!

 

Today, Sunday 6/7/15, I woke up feeling just fine aside from some popping in my joints, which I would still get on occasion while gluten free. I just are a biscuit from Hardees, and still have the huge appitite, but no brain fog, and my digestive tract has been just fine the whole time with normal BMs.

 

This now has me wondering if gluten has been my problem and I coincidently had the flu when I initially tried the elimination diet. One question I have is could the increase in appitite actually be a symptom? Could the initial brain for I felt have simply been psycological?

 

I am obviously going to continue the challange, and no matter how it goes plan to get tested in case I am one of those that doesn't experience many symptoms, but I would be curious to hear if anyone here has had similar experiences after going back on gluten after such a long period of time. From what I've read, most seem to be more sensitive to it as your body heals.

 

Thanks for taking time to read this, I will keep updating as I continue my challange.

 

 

 

 

 

[nvsmom]

Welcome to the board.  

 

You could have celiac, and I think it is very smart of you not to rule it out just because you don't have the typical GI symptoms.  Most people are unaware that celiac disease usually affects other parts of the body - anemia is the most common symptom!

 

Your increased appetite probably has more to do with eating starches that are instantly converted to sugar in the body.  Flours and starches are (as far as your body is concerned) sugar (glucose) in a powdered and baked form.  Sugar will affect your body causing your appetite to go up, and for you to crave more of the same foods.  More natural, whole foods don't put our bodies on the same food roller coaster.

 

If I was you, I would stay the course on the gluten challenge.  All you need is a 1/2 to 4 slices of bread per day (1 or 2 being the most cited) or the equivalent... or one doughnut.    Get all the tests done (ttG IgA and IgG, DGP IgG and IgA, EMA IgA, total serum IgA, and maybe the older AGA IgA and IgG tests) and then reassess your health.  Perhaps keep a food and symptoms journal so you can keep track of how the normal diet is affecting you, and how you feel differently that when you eat gluten.  

 

You've said that you notice some differences after being gluten-free for only a month.  That's fairly significant right there.  When one with celiac disease or non-celiac gluten sensitivity (NCGS) goes gluten-free, it is usually the GI symptoms that start to clear up in the first few weeks.  Most symptoms take much longer to improve, and some like neuropathies, deficiencies, and arthritis can take years to improve.  If you decide to go gluten-free again, try to stay gluten-free for a good 6 months and THEN take another look at the gluten-free diet's effectiveness for you.  That much time gluten-free will tell you a lot more than just a month.

 

Also, if the tests are negative and you decide to continue eating gluten, you will need to retest every 2 years, or as son as symptoms present themselves.  Celiac is a genetically linked disease, and those with first degree relatives (parents, siblings, children) have a much higher risk of developing celiac disease at some time in their lives, and it can happen at any time.

 

Best wishes to you.  

[dbva]

Thanks for the welcome and reply!  That makes sense to explain my hunger, which I see as a positive as I have actually lost weight since going gluten free. I was already at the low end of the acceptable weight for my height and age, and now below it, so being able to pack in the extra calories is very welcomed!

 

You've said that you notice some differences after being gluten-free for only a month.  That's fairly significant right there.  When one with celiac disease or non-celiac gluten sensitivity (NCGS) goes gluten-free, it is usually the GI symptoms that start to clear up in the first few weeks.  Most symptoms take much longer to improve, and some like neuropathies, deficiencies, and arthritis can take years to improve.  If you decide to go gluten-free again, try to stay gluten-free for a good 6 months and THEN take another look at the gluten-free diet's effectiveness for you.  That much time gluten-free will tell you a lot more than just a month.

 

Well I have actually been gluten free for two years now. When I initially tried the elimination diet it was for a month. Then I became sick with flu like symptoms, as many describe, when I tested myself by eating it. I had decided it had an affect and I felt bad enough it made me stop eating it (felt much worse than before I even tried it), so I went on a strict gluten free diet. I just now decided to go ahead and do the challange so I could get an official diagnosis so I know just how cautious I need to be when eating out, etc... This came about when I ate some soup while dining out, had no reaction, and later discovered it had contained gluten (I was always more cautious than this). I now wish I had undergone testing before I first tried the diet, but hindsight is 20/20, haha.

[nvsmom]

Ah, gotcha.

 

There are a number of people around here who went gluten-free before getting tested, or skipped testing altogether.  The gluten challenge can be pretty nasty. I hope the next few months aren't too hard on you!  Don't overdo the gluten.

[dbva]

Well, thankfully my symptoms have been on the mild side so far...but they ARE there! Brain fog has to be the worst, but I am kind of starting to adjust to it. I have however been very irritable, but keep telling myself it's the gluten, take a deep breath and move on. Aside from that I have experienced a lack of energy and joint inflamation and popping, which actually seems better if I make myself stay active. I have had some abdominal discomfort at times when I've had larger amounts of gluten, but aside form that no GI issues have arised so far. 

 

I plan to stick to the challange, but have thought about looking into getting tested after a month or so to see if I can get a positive result sooner, and continuing the challange for the full 12 weeks before testing again if it comes back negative. Fortunately I have good insurance, haha. Would this be a good decision so I may not have to torture myself all summer, or would it be a waste to test that soon?

 

I will say to anyone reading this prior to going gluten free, I HIGHLY recommend getting tested before getting a taste of what it feels like to be normal! Like I said my symptoms have been mild compared to many, and I couldn't imagine putting myself through this if they were as bad as many describe.

[dbva]

Well, I think I've decided to stop the challange and just go undiagnosed unless anyone can give a really good reason to continue. I'm becoming so irritable and unable to concentrate it's going to end up causing more negative in my life and relationships with others, than it's worth to get an official diagnosis. After all the only solution is to simply be gluten free, whether it's an intolerance or celiac, right? Sure it would be nice to not have to be so careful eating out, have the occasional doughnut or beer, and maybe even being able to declare gluten-free foods as a medical expense, but I'm just to the point I really want to go back to being my real self again!

[nvsmom]

Understandable. I'm sorry it's been so bad for you.

 

As long as you are strictly gluten-free, and don't take those riskd because you don't know for sure if you are a celiac, I can't think of any reason to get tested.  Some people need the diagnosis for accommodations to be made for them (college food plan, or a nursing home) but beyond that, there isn't anything really.

 

I would just remind all doctors you see that you are a suspected celiac but could not complete the gluten challenge because of the severe reactions.  Doctors will need to know if you have an autoimmune disease because it can affect how you are treated in the future; t could affect how quickly you get treatments for other health problems like how quickly you gett tested for diabetes or thyroid problems if you have minor symptoms.

 

Hope you feel better again soon.