Should I get tested for Celiac Disease?

[mlec]

Hi everyone, I just joined because I'm wondering again if I might have Celiac Disease and thought getting some opinions from people with experience would be the best place to start.

Back in 2012 a holistic doctor prescribed a gluten free diet for me based solely on symptoms (CFS mainly) as my blood work came back negative for antibodies to gluten (I do not remember the exact test). I responded dramatically well to gluten free eating and remained that way for over two years. The problem that occurred was that eventually I became very fearful of food in general and started having some symptoms of a restrictive eating disorder. I started eating gluten again to pursue full recovery from my eating disorder in the absence of a confirmed Celiac disease diagnosis. 

I seemed to do o.k. for a while with the gluten and attributed my symptoms with eating disorder recovery. I've been eating gluten again since October of 2014. Recently I switched to lactose free milk because of digestive problems and it helped so much that I started to notice other GI offenders which, perhaps coincidentally, happen to always contain gluten. I spent the day with my adult daughter recently who eats gluten free (although not diagnosed either) and I didn't have any gluten that day and I noticed I felt so much better! What was particularly striking was that I was not bloated or having the persistent and nagging abdominal discomfort whatsoever. I guess it could have been the positive emotions though.

So at this point I consider myself in remission from the eating disorder and I'm leaning toward this issue with gluten not being just my imagination. I've also had the rashes that appear to be DH on my elbows again. Can people have both DH and GI related symptoms?

I do not have very good medical coverage so I hesitate to spend money persuading a doctor to test me if it sounds doubtful I have Celiac Disease. Any input would be appreciated. I realize no one on line can diagnose and I'm just interested in opinions on the value of testing for my situation. Thanks, Melissa

[GFinDC]

Hi Mlec,

Yes, it sounds like you could have celiac disease.  As you are aware, symptoms don't have to be GI related, but can appear in other areas of the body like the rash you described.  Antibodies can also attack the nerves, joints, skin, thyroid, brain, etc.  Really, celiac symptoms can affect any area of the body, because nutrition affects the whole body.  If we don't absorb nutrients correctly, the whole body is affected.

I think celiac testing would be a good idea.  A gluten-free diet doesn't have to be restrictive, except for gluten.  There are plenty of other foods to eat, including meats, veggies, nuts, and fruit.  Plus other non-gluten grains or grain like foods like buckwheat and quinoa.

Sometimes people are very concerned at the beginning of the gluten-free diet because they are learning about it for the first time.  They  don't know for sure that something is safe to eat so they may not want to try a lot of suspicious foods.  That's fine, we have to start somewhere on learning the ropes.  That's why it is good to stick to whole foods because it's much easier to know they are gluten-free and not cross-contaminated.  It's pretty easy to rinse off a piece of fruit.

Since celiac disease runs in families, it might be worthwhile being tested for your daughter's sake.  If you have celiac, it is possible your daughter has it or will develop it at some point.

 

[mlec]

Thanks for your reply GFinDC. I think I will go ahead and get tested. I realize I probably should never have started eating gluten again but I got myself in such a pickle from falling into the viscous cycle of not eating enough in general that I wasn't thinking clearly. My husband was not supportive of my gluten free eating style because I didn't have a Celiac diagnosis so in my weakened state I wasn't up dealing with difficult family dynamics on top of everything else. I also tested low in vitamin D and folic acid last fall so that points to some malabsorption. On a positive note I already know quite a bit about living gluten free so it shouldn't be a rough transition this time around! Thanks again.

[SLLRunner]

Welcome, Mlec!

I think anytime a person even suspects they might have a gluten sensitivity, or might be celiac, that testing should be done. I'm glad you decided to get testing. Please let us know how it goes.

[GFinDC]

I think that's a wise choice mlec.  Those low vitamin levels have to mean something.  Quest Diagnostics does celiac testing, but I think a doctor has to order the tests.  I think there's another lab that does testing where anyone can order the antibody tests, but I don't remember the name of it.

[RMJ]

In some states you can order the tests yourself at www.mymedlab.com, but I don't remember if they have the full panel.

[mlec]

Thanks for the warm welcome SLLRunner. I will keep you posted.

GFinDC and RMJ, 

You both must have read my mind! I've been researching some different lab companies that don't require a doctor's order to get the ball rolling on the testing. I've done that in the past with other issues when I was between insurance so fortunately it is perfectly legal to order your own labs where I live.

Now I just have to work out the details of it all. I've noticed my gluten consumption has dramatically decreased over the last couple weeks and I've probably only had it three times since my visit with my daughter last week (felt terrible each time). So I guess at this point I should up my intake again for the antibody panel so I don't thwart the results but part of me just desperately wants to go with the genetic test first so I can stay off gluten longer. I'm going to have to talk to the family too. The testing would honestly be more for them at this point anyway. I developed a small buffalo hump and a slight cushingoid appearance over the last year and a half of eating gluten again and that has already stopped hurting and ever so slightly reduced so if it were me I'd be happy to call myself intolerant and leave it at that but I understand the immense value the testing has for numerous medical and social reasons. 

Thanks for reading my ramble and for the kind, support replies.

[cyclinglady]

The genetic test only EXCLUDES celiac disease.  About 30% of the poulation carries the "celiac" genes.  A positive on the genetic testing will just tell you that you have the ability to develop celiac disease not that you will get it or have it.  Antibody testing is usually ordered first to help diagnosis celiac disease.  

[mlec]

Thank you cyclinglady. 

[squirmingitch]

Make sure you get the full celiac serum panel. This is it:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[mlec]

Thanks squirmingitch. I'm copying this down so I get it right. I last had gluten this past Monday so hopefully that won't mess up my results too much if I start eating it again right away and wait another week or two for the test. I wouldn't have gone so long without eating it but I wound up with the flu so I just wasn't able to eat much period for a few days. I've never found the go to advise for saltine crackers particularly helpful when I've had an upset stomach anyway.? My elbow 'rash' is almost gone too btw.

I greatly appreciate everyone's help! 

[SLLRunner]

1 hour ago, mlec said:

Thanks squirmingitch. I'm copying this down so I get it right. I last had gluten this past Monday so hopefully that won't mess up my results too much if I start eating it again right away and wait another week or two for the test. I wouldn't have gone so long without eating it but I wound up with the flu so I just wasn't able to eat much period for a few days. I've never found the go to advise for saltine crackers particularly helpful when I've had an upset stomach anyway.? My elbow 'rash' is almost gone too btw.

I greatly appreciate everyone's help! 

Prior to a blood test it's advisable to eat gluten every day for at least 8-12 weeks, otherwise you can get a false negative.

[mlec]

Thanks SLLRunner, 

As much as I don't look forward to eating it everyday for that long I would definitely rather do the test correctly! We are in the process of selling our house and relocating so I might wait to do the test properly once we get moved in June. Since we are downsizing in part because I've been too ill to work much for the last couple of years I feel that it might work out better if I do the test when I can take time off work and I will have to find a new doctor anyway if I need the small intestine biopsy. I did have some gluten yesterday and my elbow rash flared up again. I suppose I could look into getting that checked in the meantime.

Thanks for providing me crucial information to get to the bottom of this and have the best chance of getting an accurate diagnosis! 

[SLLRunner]

Deleted-double reply.

[SLLRunner]

My apologies, I see I already  replied to this posting and for some reason I can't edit it. In any event, mlec I'm so glad I could help.

[mlec]

Somehow I will get tested. There really are just too many clues that something autoimmune is going on because the same digestive and skin problems keep cropping up. The doctor that put me on gluten free about 4 years ago instructed me to get my blood work done and then stop eating gluten until I heard back from her. It took 2 months for me to hear back because as it turns out her nurse quit and my case fell through the cracks but I felt so much better I wasn't too concerned. At that point if I wanted further testing I was going to need to reintroduce gluten so I declined because I didn't want to go back to feeling poorly. Since I was already over 40 years old and had been sick for decades I just couldn't face going back to the chronic fatigue which was finally starting to lift.

 

I did go to a GI doc last fall and was prepared for an endoscopy and colonoscopy but as I was on the stretcher with an IV running the staff informed me the doc had been in a car accident and wouldn't be able to make it in for the procedure. That's just another example of the many frustrations I've gone through to get to the bottom of this nightmare. My dealings with doctors have left me less than confident so it's definitely more than money that has me hesitant to deal with them again if I can avoid it. I work in the medical field myself and witness on a first hand basis how a person needs to either be in a strong place to  be able to advocate for themselves or have someone else looking out for their best interests in order to navigate the system and receive adequate care. I do think that I will be able to do this for myself this time around in part because I am equipped with a better understanding of the proper preparation and testing that needs to happen. I doubt I could have figured this out on my own very easily without the help of everyone who replied.

I will let you all know in a few months what I find out. Thank you from the bottom of my heart.

[zenjess1980]

On ‎3‎/‎29‎/‎2016 at 10:40 AM, mlec said:

Hi everyone, I just joined because I'm wondering again if I might have Celiac Disease and thought getting some opinions from people with experience would be the best place to start.

Back in 2012 a holistic doctor prescribed a gluten free diet for me based solely on symptoms (CFS mainly) as my blood work came back negative for antibodies to gluten (I do not remember the exact test). I responded dramatically well to gluten free eating and remained that way for over two years. The problem that occurred was that eventually I became very fearful of food in general and started having some symptoms of a restrictive eating disorder. I started eating gluten again to pursue full recovery from my eating disorder in the absence of a confirmed Celiac disease diagnosis. 

I seemed to do o.k. for a while with the gluten and attributed my symptoms with eating disorder recovery. I've been eating gluten again since October of 2014. Recently I switched to lactose free milk because of digestive problems and it helped so much that I started to notice other GI offenders which, perhaps coincidentally, happen to always contain gluten. I spent the day with my adult daughter recently who eats gluten free (although not diagnosed either) and I didn't have any gluten that day and I noticed I felt so much better! What was particularly striking was that I was not bloated or having the persistent and nagging abdominal discomfort whatsoever. I guess it could have been the positive emotions though.

So at this point I consider myself in remission from the eating disorder and I'm leaning toward this issue with gluten not being just my imagination. I've also had the rashes that appear to be DH on my elbows again. Can people have both DH and GI related symptoms?

I do not have very good medical coverage so I hesitate to spend money persuading a doctor to test me if it sounds doubtful I have Celiac Disease. Any input would be appreciated. I realize no one on line can diagnose and I'm just interested in opinions on the value of testing for my situation. Thanks, Melissa

Hello  I am recovered from an eating disorder for 10 years now, so I did want to say congrats on your recovery! I think getting tested for Celiac is up to you, and I say that because of medical coverage. With that said, if going gluten free helped you in the past, it certainly cannot hurt to do so again. I know gluten-free helps with a plethora of issues. While testing for Celiac would likely confirm a diagnosis, the only way to feel better (which you've experienced in your situation) is by going gluten free --- which costs nothing  

[mlec]

Thanks for your reply zenjess1980. It's so nice to hear from someone else recovered from ED!!!! It seems to me that food intolerance could cause or at least contribute to the development and/or continuation of an eating disorder. I've read the opposite as well that the stress of starvation can contribute to food intolerance. Since I didn't overcome my lactose intolerance and it actually became worse after reintroducing gluten I'm guessing perhaps it really is a gluten issue that led me to gravitate toward restrictive diets in the first place because I felt better from eating less and by coincidence that resulted less or no gluten! So confusing but since I now understand the importance of eating enough I think I can finally manage to nourish myself well. I'm so grateful for your reply.

[mlec]

I actually just had a heart to heart conversation with my husband about my gluten concerns and shockingly he doesn't think I should necessarily bother with the testing. I figured he would really want that after everything that's happened but he basically agrees that something hasn't been right since I went back to eating gluten and thinks if it's that obvious to me that it is causing problems then I should just eat in a way that I feel best. He also made a good point that I do officially have the diagnosis on my medical records at this point anyway so no one would probably ever question it. When I told the MD I went to after the holistic doctor experience about being put on a gluten free diet she recorded gluten sensitive enteropathy as a diagnosis in my chart for some reason. Eventually I'll probably still get tested after the move and everything but it's a relief to know that in the meantime I have support at home. Thanks to everyone who listened and replied in my slightly confused and desperate time of need. I hope it is okay to be an active member while I continue on even if I don't have an official dx yet!

[squirmingitch]

You are a member, never doubt that! It doesn't matter if people have an official dx or not. So many people have gone through stories like yours and stories of years upon years upon years of seeking a dx only to be thwarted by incompetent doctors. There comes a time when they just have to say they will not kill themselves any longer pursuing an official dx and just go strict gluten free on their own.

The really super news for you is that your hubby has your back and supports you fully. There is no replacement for that! Give him some extra attention for being such a great guy.

[mlec]

It is such a relief squirmingitch! We went out for gluten-free Pizza tonight to celebrate. I'm glad I can continue to participate and thanks for helping me feel welcome here.

[SLLRunner]

4 hours ago, mlec said:

 I hope it is okay to be an active member while I continue on even if I don't have an official dx yet!

You are a member here with our without a diagnosis. 

[mlec]

Thanks SLLRunner. This seems like such a nice and welcoming community!

I just got home from a 5 day trip out of town and noticed that compared to just a couple years ago there seems to be more gluten free options even at unexpected places like the gas station! I reinstalled my find me gluten free app and so far so good. It's been incredibly easy to get back in the swing of things!

[zenjess1980]

On Thursday, April 07, 2016 at 3:54 PM, mlec said:

Thanks for your reply zenjess1980. It's so nice to hear from someone else recovered from ED!!!! It seems to me that food intolerance could cause or at least contribute to the development and/or continuation of an eating disorder. I've read the opposite as well that the stress of starvation can contribute to food intolerance. Since I didn't overcome my lactose intolerance and it actually became worse after reintroducing gluten I'm guessing perhaps it really is a gluten issue that led me to gravitate toward restrictive diets in the first place because I felt better from eating less and by coincidence that resulted less or no gluten! So confusing but since I now understand the importance of eating enough I think I can finally manage to nourish myself well. I'm so grateful for your reply.

 best wishes to you on this journey 

[mlec]

Thanks zenjess1980 and to you too. I see you have been through a lot of challenges yourself.  Hopefully we both start feeling better now.