Out With The Gluten, In With My Health? (I Hope.)

[Jill-L]

Hello everybody,

 

I went looking for a site to log my experiences and found this one yesterday that seems to be the closest to what I'm experiencing, so here I am introducing myself today.  I am in my late 50's and have battled with weight and body image all my adult life.  Consequently, I have been on many different diets over the years.  Some people who know me will say that this is "just another diet" and in all fairness to them, I can't say I know they are 100% wrong.  However, before, my diets have always been about losing weight.  This time I want to see if my aching joints and fatigue go away.  Those are my most prominent complaints at this time.  

 

About a year and a half ago I gained some weight because I quit following the low-carb diet that I'd been on.  Then I discovered the classic Lyme disease ring on my leg after having been out raking leaves.  I had a test (which came back negative), but my hips began to really bother me a lot.  I blamed it on the weight for a while.  (I'm not talking a huge amount of weight, maybe 20 pounds...)  So, I had a second test done last winter as they had suggested I do if the first test was negative.  At the time of the second test, I had also begun to be tired all the time.  So they tested for Lupus also.  Both tests came back negative.  I started entering symptoms into Google and gluten-sensitivity kept coming up.  

 

Over the years I've had chronic UTI's.  My ovaries would not work on their own, so I took fertility drugs to be able to conceive.  I have two children, but lost three.  I have a very hard time sleeping due to the hip pain.  I have never been able to grow nice nails.  My skin is dry and itchy most of the time.  I'm hungry a lot - even when I'm not on a diet - or maybe it's even worse when I am not on a diet.  I have a "sweet tooth".  I have suffered with constipation most of my life.  (I have developed a fondness for glycerin suppositories over the years.  Sorry, if that's TMI.)  Often in the evenings I need to unzip my pants or go get into my nightie to be comfortable due to the belly bulging (that wasn't so bad earlier in the day).  Probably there are more symptoms that I am forgetting, but that's a good start.  So...

 

What the heck is wrong with me?  Could it be I've been gluten-intolerant all these years?

 

So, I just bought a book, The Gluten Connection, and, having read less than half of it so far, it seems like some things are starting to click.  Or is it just my crazy mind latching onto yet another diet scheme?  I'm not ready to go to the doctor's (long story, maybe another time...) and have testing done yet, -- which could be false negative anyway, right?  So, I'm thinking, what's the harm in going gluten-free for a few weeks or months to see if things improve.  Isn't that really the best test, anyway?

 

That brings me to logging my experiences.  I've read some things on this site that encouraged me to choose to post here.  I hope that's alright.  I'm very open to feedback.  Thanks for "listening".   

 

 

 

[nvsmom]

Welcome to the board.  

 

Those symptoms definitely could be celiac disease or non-celiac gluten sensitivity (NCGS). I wouldn't be surprised if you start feeling better on the gluten-free diet, but there can be harm in starting the diet before your celiac disease testing is done.  In order to test for celiac disease you must be eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to testing.  If you go gluten-free now you would have to go back on gluten for 2-3 months!  That's a really long time to poison yourself on purpose, and not everyone can make it through without setting their health back for months.  If you can, it really is a good idea to test now.

 

If you do test ask for these tests: tTG IgA and IgG, DGP IgA and IgG, EMA IgA, and the total serum IgA. If you get all the tests done, the chances of getting a false negative are pretty low - usually at least one test will be positive for a celiac.  This report shows how sensitive the tests are (page 12): Open Original Shared Link

 

If you can't get into a doctor, Biocard sells a home test of the tTG IgA that is very similar to the tests doctors use.

 

Best wishes to you in whatever you decide to do.  

[Jill-L]

Thank you, Nicole, for your quick response and suggestions.  Hoping I don't sound obtuse here, but it's something I haven't been able to figure out in my reading and musing...     I mean, if I'm going to follow a gluten-free diet anyway, why do I even need to know whether I have celiac?  There isn't medication for celiac, is there?  I thought it was all diet-related.  Other things, like being anemic or whatever -- won't they be taken care of naturally with the proper diet?  And if not, wouldn't it be treated the same way (with drugs or whatever) regardless of the celiac diagnosis?  Sorry if I am way off track, but if you could explain that, it might make more sense to me.  

 

Sign me:  Not a real big fan of doctors and tests and such anymore...  

[nvsmom]

I hear you about the doctors.  Unless I need surgery or am dying, I'm not much of a fan of them either.  LOL

 

There are a few benefits to having a celiac disease diagnosis.  One is that some people find it easier to stay 100% gluten-free for life if the diet is medically needed, otherwise those people might cheat or not take cross contamination very seriously (like picking the croutons off the salad rather than sending it back or starting over).  Eating out is greater hassle and that is where many celiacs get glutened; eating gluten-free can limit your social life in that way.  Visiting others is harder too. Most people will not believe that a crumb in the butter or a shared toaster can make us sick.

 

Another reason is when medical accommodations need to be made like staying in a hospital or going places where you need to bring your own food because their food is not safe (like on a 6 hour flight).  This is often a bigger reason for students so they are kept safe at school.

 

Another reason is medical.  There are problems, like anemia, that doctors will address in a certain way when they know you have celiac disease.  If you are low in a certain vitamin, as a celiac you may not absorb a multivitamin well so you may meed injections for a time.  Other things might include the low cholesterol found in a celiac, if it starts to suddenly rise after a year or two gluten-free, the doctor may worry why it is suddenly going up (if the celiac disease is not known about).  There is no drug to treat celiac disease but sometimes we need extra care during our recovery, and recovery usually takes months to years of eating gluten-free. Eating gluten-free is not a fast fix and a little help is sometimes needed... Plus, not everything recovers in all cases.  I'm pretty sure that if I had gone gluten-free 35 years ago instead of 2, I would be a much healthier person today.

 

Also, if you have celiac disease you are much more likely to develop other autoimmune diseases like Hashimotos and diabetes.  You'll want to keep an eye out for other related diseases. Autoimmune diseases seem to like to run in packs.  LOL

 

So, basically you can go free at any time. You just need to be sure that you are 100% gluten-free (check meds, soaps, sauces, spices, etc) and that you stay with it for good if you want to avoid testing.  There are more than a few people who did not do testing around here but they feel better gluten-free.  As long treat food like a celiac would, you will most likely be fine.  

 

Good luck.

[Jill-L]

Thanks again!     Your reasons make good sense.  I suppose I will have to see if I can't get some testing done.  If my pain and fatigue go away, I'll be motivated to keep going - at least for a while.  But, if I KNOW I have a disease, it will last longer than getting used to the relief.  Right?  And the technical reasons (medical) that I don't yet fully comprehend?  Well, I ought to take the advice of someone who clearly is more knowledgeable than I am.  After all, I did ask for feedback.  

[bartfull]

It does sound like you may have celiac. But it DEFINITELY sounds like you DO have Lyme disease. You need to talk to your doctor again. According to the CDC, if someone has the rash, no further testing need be done because that IS a diagnosis of Lyme. (And the Lyme disease test is notorious for giving false negatives.)

 

Open Original Shared Link

[nvsmom]

It does sound like you may have celiac. But it DEFINITELY sounds like you DO have Lyme disease. You need to talk to your doctor again. According to the CDC, if someone has the rash, no further testing need be done because that IS a diagnosis of Lyme. (And the Lyme disease test is notorious for giving false negatives.)

 

Open Original Shared Link

 

So true!

I remember meeting someone who wa trying to figure out her problems and she did the Biocard test which came back mildly positive. She then went to the doctor and everything came back negative. A couple of months later she discovered that she had Lyme disease and has been feeling better after being treated.

 

Nasty ticks... 

[BlessedMommy]

I'm an undiagnosed strictly gluten free person and I would be the first to tell you that it's better to have a diagnosis, if possible.

 

I don't have a diagnosis, because my symptoms when reintroducing gluten for testing were extremely severe. Eating gluten daily for 3 months could disable me or kill me, so I've chosen to live as a celiac would and practice strict avoidance of gluten for the rest of my life. 

 

If you're eating gluten currently, there's no reason not to take the tests and many reasons why they are beneficial. I often think to myself, what if I had gotten tested before gluten free? Celiac wasn't even on my radar then, though, and it never really occurred to me that I could be celiac. I just figured that if my symptoms resolved based on the elimination of wheat, then I was gluten sensitive. It was only much later that I learned what I needed to know about celiac and by that time, it was too late to get DX'ed.

 

One thing that I think is good about having a diagnosis is that many undiagnosed people only follow a semi gluten free diet. I cannot stress enough how easy it is to cut corners when you think that you're "just" gluten sensitive and not celiac. Non-celiac gluten sensitivity (NCGS) can only be diagnosed by ruling out celiac first. You cannot truly know that you're not celiac if you never got tested. 

 

I've made my stance on living gluten free pretty clear to most friends and I try to just bring my own food nearly everywhere. It makes life so much easier that way.

 

But if I had the opportunity to do it over again and get tested? I would do it, no question.

[kareng]

There isn't medication for celiac, is there?   

Not currently. But there is a very promising drug coming along. It isn't a " cure" but is meant for occasional use to help digest accidental gluten - travel, restauruants, etc. I am not sure if it will be OTC or if you would need a prescription for it. If you need a prescription, it probably wouldn't be given to people without an actual diagnosis.

[SMRI]

I would at least get the blood tests and gene testing done.  Having children, if you do have Celiac, puts them at a high risk for also having Celiac.  I would also say that given your statement about your friends and your past diet history, having a medical diagnosis is going to mean more to them vs just saying you "feel better" not eating gluten.  It's very difficult to go back on gluten after you have gone off of it so do the testing now, the full panel of testing, so you know one way or another.  

[Jill-L]

Wow!  Some good responses and reasons to get tested.  Okay.  "Uncle".  I'll do it.  I haven't seen my doctor in quite a while.  I've been planning on getting a new one.  Maybe this is the catalyst to get me going on that.  

 

In no particular order, the reasons that worked are:  So my kids will know, in case a helpful drug is introduced in the future, I don't know enough about celiac to know that I don't need to be diagnosed, and if I am diagnosed it will make other potential issues easier to deal with.  

 

As for Lyme, if I get the new doctor, maybe I'll get the Lyme antibiotic based on my history.  

 

Thanks, everyone, for taking time to share your thoughts.  It's nice to feel heard and cared about.  

[nvsmom]

Good luck with the doctors.  

[Jill-L]

Appointment made for the 26th, with my name on a list to call sooner, if available.  I'm taking a list of what tests I'd like done...  I guess this means I continue eating gluten until then.  Oh, well, in the meantime, I can start studying labels...  

[Jill-L]

I hope I remember how anxious I am/was to start eating gluten free after I've been doing it for a few days.  I am in limbo right now, waiting until the doctor's appointment on the 26th where I'll get tests done.  But, I notice now about an hour after eating something with gluten that I feel a little icky.  Makes me wonder if it's all in my head, but there are times I haven't been thinking about it at all and I just realize that I don't feel good and think back and about an hour prior I was eating something with gluten.  

 

Anyway, I know that I will miss eating bread, crackers, cookies, etc. once I give them up, but I hope I will remember this icky feeling, and I hope I don't still have it once I've been gluten-free for a few weeks (or, dare I hope, a few days even).  So, I'm writing this to remind myself in the future of that fact.  

 

 

[bartfull]

Jill, if the tests come back positive you will HAVE to go gluten-free unless you want your health to deteriorate further. The first couple of weeks will be rough because you will probably go through gluten withdrawal. You will get headaches and mood swings and an overall shaky feeling.

 

After that you will start feeling better. You may not see improvement right away but then again you may.

 

And don't worry about missing things. It's true that you should stick to whole foods at first and skip the processed foods, but after a while you will find substitutes for the things you crave. Most of us here like Canyon Bakehouse bread or Udi's. There are lots of crackers that are downright yummy.Same thing for cookies. If you miss brownies there are all kinds of good gluten-free mixes. For some reason anything chocolate comes out delicious. (You might try Udi's double chocolate muffins. They are WONDERFUL!)

 

You can make gravy using corn starch for a thickener. No lumps! If you cook there are lots of good recipes on this site and on others. Personally, I eat MUCH better now than I did before going gluten-free.

 

You might want to go read the Newboe 101 thread over in the coping section now so you will be familiar with cross-contamination and other things. It'll help when you actually start the diet.

 

Good luck and keep us posted.

[SMRI]

There are gluten-free breads and crackers.  Cookies--not so much.  I like the gluten-free crackers a lot actually.  The bread, toasted is fine.  Still working on good cookies though...

[bartfull]

Have you tried Pamela's? They're not bad at all. I like to put them on a paper plate and pop them into the microwave along with a damp paper towel. Makes 'em softer.

[SMRI]

Maybe??  I've tried several brands.  Problem here is DH likes to bake.  His Pastry Chef Grandmother taught him.  I've been spoiled all these years.  It's just not the same.  In a lot of ways it's good, I don't eat them--nor do I need to eat them .  Christmas is going to be hard, very hard!!

[Jill-L]

.  Christmas is going to be hard, very hard!!

 

I've been concerned about Christmas too, but at the moment, I'm still looking forward to feeling better by Christmas.  That'll be more important than eating the traditional things that (I think) are causing me trouble.  (Again, I'm saying all this more as a reminder to myself for once I actually have stopped eating it - and probably missing it.)  

[Jill-L]

As I promised, I'm reporting back after my doctor's appointment.  She believes I have arthritis and not Lyme based on my descriptions of what's going on.  She also wants me to try the gluten free diet and get more exercise.  Because I do not have any family history of Celiac or gluten intolerance, she did not think testing was necessary.  This was my first appointment with her, so I did not know what to expect.  But she did listen to me and then gave her opinion/advice, which is why I went to a doctor to begin with, so I went with her suggestions and did not get pushy.  I hope that's the right thing.  Time will tell.  

 

Next for me will be to set a date to go gluten free.  We are traveling to Florida next week and moving in to a new (for us) home.  I plan to keep it gluten free to the best of my ability.  We arrive next Wednesday as long as the traveling goes smoothly.  December 4th looks like my best option.  In the meantime, I'll read up and gear up!  Thanks for all your support!

[SMRI]

I would push for the bloodwork before you go off gluten.  It's just easier all that way around.  Call the clinic back and just tell them you would really like the full panel done.  That way you will know for sure one way or another.  No family history could just mean no one has been tested.  All of us have someone that was the "first" to find out they were Celiac in a family....

[BlessedMommy]

Exactly!

 

If all else fails, you can order the bloodwork from a private lab if your doctor won't accommodate you.