Can't Go Back On Gluten

[Blue1983]

I don't think I can go back to eating gluten to get a proper diagnosis. I was diagnosed with IBS about six years ago...have basically just learned to lived with it since. I've been tested for RA- negative. I've been tested for thyroid issues three times with conflicting results, My liver enzymes are always elevated. I first stopped eating white bread and all pasta about six months ago for a healthier diet. Then about four months ago I stopped eating wheat bread as well. While I was pretty much gluten-free for three months I noticed my IBS had quieted a bit, I had more energy, but most of all I had zero joint pain. About a month ago I started eating Ezekiel bread; after one day the joint pain was back, I ate it for one more day until I put two and two together. I went back basically gluten-free, then last Saturday I volunteered at my church all day, they served Subway sandwiches for lunch and dinner, then on Sunday my family wanted to go to Pizza Hut for lunch. On Monday morning I woke up so nauseous, I thought I had a stomach flu, so I ate apples, applesauce, bananas, chicken noodle soup and crackers...my "flu" kept getting worse, adding lethargy, major bloating, gas, pain and diarrhea. Thursday for lunch I had my soup and crackers and felt so bad after I couldn't eat anything for the rest of the day. On Friday, I woke up feeling better than when I went to bed...realizing a pattern of feeling so much worse after eating the soup and crackers and not the fruit, I decided to stop with the crackers and soup.at the end of Friday I felt a wee bit better, Saturday a littler better, today(Sunday) not near normal but so much better. I'd like a proper diagnosis, but can't spend another week, let alone 4-6 weeks feeling like I did this past week. I just don't feel comfortable saying I have celiac disease when I haven't been diagnosed by a doctor. Has anyone else self-diagnosed themselves? If so, why do you say you're gluten-free?

Thank you for reading this long rambling.

T

[BlessedMommy]

First of all, how much gluten do you think that you averaged per day during the past few months? It doesn't sound like you went 100% gluten free, so there may be a chance you could get tested still. Blood tests are probably worth a shot anyway?

 

As for me, I'm strictly gluten free and have never been DX'ed with celiac. Long story short, the doctors couldn't figure out the source of my problem, so I tried an elimination diet and put two and two together. By the time that I wanted to go back on gluten to get tested, I had such a severe reaction (neurological complications) after only a week and a half of gluten that everybody decided that there was no point in going any further. I'm too young to have a stroke!

 

Really, the main reason for a DX (other than knowing genetic risk for offspring) is so that you won't be as tempted to cut corners on your gluten free diet. If you can stay 100% gluten free without a DX, then you can do without it. It is very important though to be strict, if you decide to forgo a DX. 

 

There really aren't that many compelling reasons why adults have to have a DX. A DX is always helpful but definitely not mandatory.

 

Some people cite the chance of hospitalization and needing gluten free food as one reason for getting a DX, but here are my two cents on that:

 

1) If you are lucky enough to have a hospital with a reliable gluten free menu, chances are slim to none that they will require proof of celiac disease to eat off of their menu. Speaking as someone who actually has been in a hospital overnight with a great gluten-free menu since going gluten-free (I was there with my son after he had a major fracture and needed an orthopedic surgeon), they were more than happy to let us eat off their gluten-free menu without presenting proof of any medical conditions.

2) In the more likely case, that you have a hospital that is not great at accomodating the gluten free diet, you will probably be providing your own food anyway (in the form of spouse or friend bringing it from home), whether you have a DX or not. 

 

 

The bottom line for those of us who choose not to (or cannot) get a DX is that if gluten makes you sick or causes health issues don't eat it. Don't worry about what other people think! It's been a real learning process for me.

 

Depending on who asks me why I'm gluten free, I vary it up some. I may say that I have a severe gluten intolerance or something like that. For people that are closer to me, they know about my medical history and why I couldn't make it through the gluten challenge.

 

Family and close friends, tend to know that my relationship with gluten is similar to the average person's relationship with rat poison.   My in-laws have gone out of their way to understand and accommodate me and have gone so far as to buy a brand new grill for dedicated use on gluten free items. They know that I can't risk having a stroke or other health complications. It's that simple.

 

I'm the first person to say that if you can get a DX, do it! But if you can't, don't be afraid to advocate for yourself and your needs. If gluten is poison to your body, that's a serious medical condition regardless of what label you put on it. 

[Blue1983]

BlessedMommy,

Thank you for your reply. When I say basically gluten-free, I wasn't aware of any gluten I consumed, we eat a clean diet. I don't eat cookies, cakes, crakers, pretzels. I checked all my salad dressings that aren't 100% clean, all are gluten-free. The only way I would have consumed gluten If there were crumbs in the butter, crumbs on a cutting board, etc. I've gone through my house today checking labels for gluten, so far my regular diet is already gluten free, with the exception of two days of eating Ezekiel bread and from last Saturday - Thursday. Not many people know of my IBS, not a very pleasant topic of conversation. I guess I can just say I've found that eating gluten is like you said "like eating rat poisoning" , and leave it at that. People can think what they think.

Thanks again,

T

[Georgia-guy]

After 10 years of issues, I walked into an ER with my blood sugar at 40. When I told the nurse it was at 40, she looked at me like I was lying, so I handed her my meter. She about keeled over. (You should be unconscious at 40) My doc ran an A1C test, normal-no diabetes. She sent me to a nutritionist to "balance my sugar intake". The nutritionist went through my medical history, and asked if I had been tested for celiac, which I hadn't (and that's probably the only thing I had never been tested for). She called my doctor, who refused to run the test as "there was no family history or basis for the test". The nutritionist told me to go gluten free for a week or so and see if I saw improvements. I saw some improvements after a week and a half, but even then my doctor didn't agree with a need for the tests. After a while of fighting, I paid out of pocket at a lab for it. My tests showed celiac, but my doctor still will not acknowledge it, as such, I am technically "self diagnosed", but I will NOT do a challenge just to get a note on my charts. I have just been glutened for the aecond time since going gluten free and I can already tell it's gonna be worse than last time. :-/ The 2 words "celiac disease" on my charts are not worth the challenge to me.

[BlessedMommy]

Wow, Georgia_guy, that's pretty crazy that your doctor won't acknowledge your lab work! Are you going to switch doctors? Another doctor could look at your lab work and notate it in your charts.

[Georgia-guy]

Blessedmommy, in all honesty, I am done with doctors. I have yet to find one who actually listens and pays attention. I had one doctor actually try to give me a shot that the last time he have me the same thing he had to call an ambulance and have me rushed to the hospital from his office. I'm just through with them.

[BlessedMommy]

I don't blame you. What a lot of hassle to go through!

 

If you want to screen your nutrient levels, you can always order the bloodwork yourself.

 

You are celiac and I wouldn't consider you self-diagnosed. You had the tests done.

 

If a celiac had positive bloodwork and a positive biopsy and the doctor told them they don't have celiac, that doesn't make it true. A duck is a duck, regardless. 

[Blue1983]

Georgia_guy,

That's an awful story. Thank goodness for the astute nutritionist. I'm hopeful you will feel better very soon from your recent gluten setback.(sorry not sure what the correct term is)

I've decided I'm just going to consider myself as having celiac disease. I don't think I could go through 4-6 weeks of being as sick, or sicker than, I was this past week. I weigh 96lbs., I'd end up in the hospital if I had to go through 4-6 weeks. My DH I has been worried enough this past week, it wouldn't be fair to him or my children to basically "make" myself sick just for a proper diagnosis.

Thank you,

T

[cyclinglady]

My husband went gluten-free 13 years ago at the advice he received from my allergist and his GP. No testing was done. His symptoms resolved. There is no way he would ever do a challenge and I can not blame him.

I was formally diagnosed last year. What are the odds that both of us have issues with gluten? Hubby will tell you that I have received more support from family and friends. And my doctor did not hesitate to order a celiac disease test for our daughter. I needed that dx because anemia was pretty much my only symptom. I do not think I would have been able to give up gluten without proof. I have allergies and it is easy to give up something when you have a physical reaction. I could not have imagined that gluten was causing my anemia. If I had IBS, like you, it would be easier.

Hope you feel better soon!

[Tricia7]

I am self diagnosed. I don't know if I am officially Celiac, or if it's just gluten sensitivity. My doctor was skeptical,  and obviously didn't know that much about Celiac's and I have not pursued switching doctors yet.

 

When it's come up, I usually tell people "I figured out wheat was causing my horrible migraine headaches, so I don't eat wheat, I have gone gluten free"  Most people seem to understand that. I actually prefer telling people that than even bringing up Celiac's disease. Since unless you or someone you are close to has it, they often don't even know what it means and it makes it this long drawn out thing that they don't really even care about.

 

I told an 11 year old the "I figured out wheat was causing my horrible migraine headaches, so I don't eat wheat" and they got it.  It's an easy and simple explanation.

 

Granted the relief from the migraines was the motivating factor in my switching to a gluten free diet, but it was just the tip of the iceberg of the positive effects I have had.  If people ask me about if after I give them the short answer I will elaborate, and some do, some don't.

[SMRI]

I'm confused Georgia-Guy--you do or don't have diabetes?  I'm wondering why you had a monitor and maybe I just need more coffee .

 

Hopefully some day they will come up with better testing so people don't have to do the challenge.  I guess I should consider myself lucky that mine was found during a battery of other testing.  I don't know if any clinics are doing any research projects to develop better tests but it might be something that would be good to know and volunteer for if anyone meets the requirements for whatever study.

[BlessedMommy]

Yep, I second the hope for better testing. I just hope that it's not too expensive, I could probably never afford to pay for an in vitro gliadin challenge out of pocket.

[SMRI]

I've read online that the lab centers that do the testing run in the $150ish range, give or take.  Not cheep but not too bad either.  Usually those lab center places are pretty inexpensive compared to what gets charged at a hospital or clinic.  Overhead is lower.

[BlessedMommy]

$150 is pretty cheap for tests. 

 

I know that even if I had been able to finish my gluten challenge, I would have only been able to afford bloodwork and not biopsy and thus wouldn't have ended up with a gold standard DX anyway. I've heard that the endoscopy can run thousands of dollars.

[SMRI]

Looking at my bill....my labs were $111.07 for the tissue IGA test, $88.99 for the IgA, $336 for each of the genetic tests, endoscope was $1313.41 plus $234.76 for the biopsies, $238 to read the biopsies.  I have very good insurance and have met all of my out of pocket costs for the year so I won't pay anything for these or the rest of my $9000 bill .

[Mitchie K]

After 10 years of issues, I walked into an ER with my blood sugar at 40. When I told the nurse it was at 40, she looked at me like I was lying, so I handed her my meter. She about keeled over. (You should be unconscious at 40) My doc ran an A1C test, normal-no diabetes. She sent me to a nutritionist to "balance my sugar intake". The nutritionist went through my medical history, and asked if I had been tested for celiac, which I hadn't (and that's probably the only thing I had never been tested for). She called my doctor, who refused to run the test as "there was no family history or basis for the test". The nutritionist told me to go gluten free for a week or so and see if I saw improvements. I saw some improvements after a week and a half, but even then my doctor didn't agree with a need for the tests. After a while of fighting, I paid out of pocket at a lab for it. My tests showed celiac, but my doctor still will not acknowledge it, as such, I am technically "self diagnosed", but I will NOT do a challenge just to get a note on my charts. I have just been glutened for the aecond time since going gluten free and I can already tell it's gonna be worse than last time. :-/ The 2 words "celiac disease" on my charts are not worth the challenge to me.

 

 

 

 

I had a very similar experience! I was a bridesmaid in my sister in laws wedding (before I went Gluten-Free) and had just eaten a multigrain sandwich before the wedding. I became so lightheaded during the ceremony I ended up passing out onstage, and when they checked my blood sugar levels with a glucose meter it was in the 50's! A doctor told me I'm not "eating enough whole grains" bull. As soon as I went gluten free, my blood sugar completely stabilized itself. I used to check my blood sugar every day because of hypoglycemia. Now? no problems!

[Blue1983]

Thank you to all who have replied, every post has been helpful I some way.

I went grocery shopping today, first day I've been out of the house since last Sunday, it felt very different avoiding items I would normally because I wanted to, from now because I have to:)

Thanks again.

T

[BlessedMommy]

Remember to read the Newbie info 101 info. It gives valuable information on how to do the gluten-free diet successfully, including preventing cross contamination.

 

I hope that you feel better soon!