Gluten intolerant?

[Rdugdale]

Hello, 

I am just in the starting process of finding out if i am gluten intolerent. 

It started about 6 weeks ago when it was pointed out to myself spots on my arms could be an intolerance. I had the following symptoms- 

what felt like extreme tiredness so much so i would be falling asleep at like 1pm in the afternoon. 

The strangest feeling head, something i now believe could be whats referred to as "fuzzy head" 

bad stomach acid

headaches that are extremely  bad right behind the eyes.

what i thought was random high temperatures like so hot i would wet from sweat in bed.

 

after a quick read up i thought it would be a good idea to quit gluten for a trial period, after a couple of weeks i started noticing the symptoms had calmed down. Now 6 weeks later i have messed up a couple of times and eaten gluten, every time has been for dinner and i notice the affects dramatically more than i used to now, usually the next day around 2/3pm im wiped out fast asleep from the extreme tiredness. 

 

I wonder do these symptoms sound familiar? Am i on the right track? 

Thanks

richard 

 

 

[GFinDC]

Hi Richard,

Your symptoms and reactions do sound like possible celiac disease.  I don't know if you plan on being tested, but if you do you should resume eating gluten now.  The blood tests depend on detecting active immune system antibodies to gluten (gliaden) in the blood stream.  The blood stream antibodies decrease after going gluten-free.  The 2nd part of celiac testing is having an endoscopy to check for damage to the gut lining (villi).  You don't need to eat a lot of gluten to keep the antibodies active in the blood stream, a slice of bread or 2 should do it.  You may have already gone too long without gluten for the antibodies to be detected in the blood stream.  But you could get a celiac disease panel scheduled asap and eat a little gluten every day until then.  Otherwise, if you wait, the doctor will probably ask you to do a gluten challenge, and eat gluten for 12 weeks for the blood tests or 2 weeks for the endoscopy.

Welcome to the forum Richard!

 

 

 

[Rdugdale]

Thankyou GFinDC for your quick reply, my issue is i work long days so getting to the doctors is really tricky for myself, if it is celiac disease would this be treated with anything more than a gluten free diet? 

Im in the UK and it is next to impossible to get a doctors appointment here if you are just the average joe who works inbetween the hours of 8 and 5. 

Perhaps i could be tested privately i will look into that now as hopefully they will be available weekends and evenings. 

 

Is it normal for the syptoms to feal worse after going gluten free for some time when you then have some gluten? I guess it could possibly be that i grew to live with the symptoms and have now forgotten them.  

[SLLRunner]

Hi @Rdugdale,

Welcome! 

I was tested for celiac, told my numbers indicated I did not have it, got the runaround from the doctors when I told them the full blood panel was not taken, changed to a different GI who spent umpteen time with me and asked me to try the low Fodmap diet under the care of a dietitian because (1) it sounded like I could have IBS and (2) gluten sensitivity is very real and (3) sometimes people are sensitive to the wheat instead of the gluten itself. 

Since the second week in September I've been on this dietary plan, which is basically an elimination diet. After about four weeks, you start individual challenges with the food "group" types one at a time, one of them being gluten. 

I told my dietitian that I will not be adding gluten back in because my first experience of eliminating it for a month helped me tremendously, and when I added it back in for a six week gluten challenge I felt sick again pretty quickly.

When I was eating gluten, my symptoms were fatigue, aches and pains in my joints and muscles, foggy brain (couldn't concentrate and poor articulation), out of control acid reflux, GERD, Gastrtis, poor sleep, moodiness, anxiety and constipation alternating with diarrhea. 

My boss was asking me what was wrong, as he noticed my inability to concentrate and stay on top of my game. He also noticed my anxiety.

So, I am following this elimination diet to see what groups of foods might bother me, all the while having no gluten, and here is almost two months later and I feel fantastic!  I know I goofed a few times because I felt instantly ill, read boxes/packages, and saw that the product was made in a facility where wheat could get mixed in the food. Lesson learned: read packages. 

My point is that I will never be tested for celiac because I refuse to eat gluten again because of how great I feel.  My acid reflux/gastritis/gerd have calmed down 95%, I can concentrate again, I have energy, I'm sleeping, my aches and pains are gone.  Even my digestive problems have even calmed down. 

You must do what you need to do for yourself, but you also must be diligent and strong when you choose to abstain from gluten. All it took for me was starting to feel better and experiencing the improvement at work, at home and everyday life.  

[cyclinglady]

Since you can not get into see a doctor, consider a Biocard.   I think they are available from Boots.  While not the most accurrate, it is a start.  It has worked for several people in the UK and Canada.  A positive really motivated them to get further testing from their medical doctors.  

I was diagnosed formally three years ago, but my hubby went gluten-free per the advice of my allergist and his GP.  Not the best advice (would have been nice for a formal diagnosis), but after a year of fumbling and testing, we agreed that gluten makes him sick.  So much that he has adhered to the gluten-free diet for 15 years!  

Only you can determine what is best for you!  I wish  you well.  

[cyclinglady]

8 hours ago, Rdugdale said:

Thankyou GFinDC for your quick reply, my issue is i work long days so getting to the doctors is really tricky for myself, if it is celiac disease would this be treated with anything more than a gluten free diet? 

Im in the UK and it is next to impossible to get a doctors appointment here if you are just the average joe who works inbetween the hours of 8 and 5. 

Perhaps i could be tested privately i will look into that now as hopefully they will be available weekends and evenings. 

 

Is it normal for the syptoms to feal worse after going gluten free for some time when you then have some gluten? I guess it could possibly be that i grew to live with the symptoms and have now forgotten them.  

Celiac symptoms can wax and wane.  Celiac experts agree that these changes make it difficult to identify celiac as there are 300 symptoms for it.  I was anemic when diagnosed.  No tummy issues.  Now, after a glutening, my symptoms are severe.  I get all the GI issues, plus more!  

[Rdugdale]

Sll runner thankyou for your reply, those symptoms regards the conentration sound so much like how i feel, i ate gluten yesterday to see how i feel and im currently struggling to concentrate and am fighting to stay awake and it is 18:20 where i am. 

I used to take medication for my acid reflux (nexium) since being gluten frew i have not needed to take it and up until yesterday i hadnt even needed anti acids. 

 

Your symptoms sound so very familiar to mine it is comforting to know it seems i am on the right path. 

 

[Rdugdale]

3 hours ago, cyclinglady said:

Celiac symptoms can wax and wane.  Celiac experts agree that these changes make it difficult to identify celiac as there are 300 symptoms for it.  I was anemic when diagnosed.  No tummy issues.  Now, after a glutening, my symptoms are severe.  I get all the GI issues, plus more!  

Very interesting cycling lady,  i say this as i have never really had any issues regards bowel movement until today after being gluten free for weeks and having tried gluten last night today i had diareaha (excuse poor spelling)

[GFinDC]

13 hours ago, Rdugdale said:

Thank-you GFinDC for your quick reply, my issue is i work long days so getting to the doctors is really tricky for myself, if it is celiac disease would this be treated with anything more than a gluten free diet? 

I'm in the UK and it is next to impossible to get a doctors appointment here if you are just the average joe who works in between the hours of 8 and 5. 

Perhaps i could be tested privately i will look into that now as hopefully they will be available weekends and evenings. 

 

Is it normal for the symptoms to feel worse after going gluten free for some time when you then have some gluten? I guess it could possibly be that i grew to live with the symptoms and have now forgotten them.

Hi Richard,

Yes, it's pretty common for symptoms to be worse after being gluten-free and then eating it again.  At least, at the beginning of the healing process.  Months or years later, your symptoms may be lesser for a minor glutening.  Those worse symptoms are why we suggest people don't go gluten-free before completing all celiac disease testing.  Unfortunately, often enough doctors will suggest patients go gluten-free to "try it out' without doing any testing.  Most doctors are not up to date on celiac disease testing.  If you can find a local celiac disease support group, they may be able to recommend a good doctor.

There is currently no treatment for celiac disease except the gluten-free diet.  There is another forum member in the UK going for private testing for similar reasons.  The other testing people do besides the blood antibodies and the endoscopy, is a gene test.  The gene test being positive doesn't indicate you definitely have celiac disease though, just that you "are in the market" for possibly getting celiac.  Many more people have the genes than actually develop celiac disease.

In the UK there is tax credit or some such thing for people with celiac disease to buy gluten-free food.  So some people do the testing so they can take advantage of that.

Testing is an individual choice.   Some people have such severe symptoms they can't complete a gluten challenge for the testing.

[GFinDC]

Hi Richard, I moved your thread to the pre-diagnosis testing section of the forum.  It seems like a better place for it than the tech help section.   You may get more responses to it in the pre-diagnosis section.

[Rdugdale]

Thankyou thats great.

[Rdugdale]

Hello again guys, to start off thankyou for all your input, since last responding to this thread i have been on a strict gluten free diet, it is quite hard i must say!  Especially when trying to eat on the road, it has been almost a month now of 0 gluten and have felt great for it.

 until today, i have not tried any of the gluten free products around and fancied some pasta for dinner and so i bought some gluten free pasta the ingredients are as follows- 

Rice flour, white maize flour, yellow maize flour, emulsifier. 

I am feeling the exact symptoms of when i have previously had gluten, i find it very hard to describe the head feeling i believe to be "foggy brain" but there is one thing i know it is not like any other feeling! It is definately that with the extreme lathargy and acid reflux. 

My question is, is this normal?  I dont understand i thought the pasta was gluten free? Could it be something else i have? 

Any feedback greatly appreciated?