Is Eating Gluten Worth A Possible Diagnosis?

[aberlee]

So I am brand new to this site, as well as the gluten free world for about a month and a half now. Why did I go gluten free? Well, for the past two years I have been having joint pain and odd food "allergies" that would come and go. I went to the doctors office last year and was sent to rheumatiodology then brushed off with a clean bill of health. I went again this year (different doctor, much better than the previous) she sent me to an allergist and talked to rheumatoidology for me. Rheumatiodology said my hands (dry, cold, changes colors, joint pain and stiffness that don't get better with use) are "interesting". The allergist basically told me that it cant be an allergy since it goes away (nothing I didn't expect), but wanted to do a blood test (just for funzies I thought). I basically went to the allergist to jump through one more hoop so my doctor would look down other avenues. However, when I got my results back my allergist told me it tested positive for the lab but it was still borderlined (IGA 21.45). He told me that he does't suggest a change in diet but he would like me to test again in three to six months.

 

I didn't even understand what gluten or gluten intolerance was until my results came back and researched it online. I was fortunate enough to stumble upon a blog where people described their symptoms. While reading this as well as some of the "text book" symptoms I decided to try going gluten free to see if I noticed a difference. YES!!! Yes I have noticed a difference! My hands have been better, I can smell (weird I know), I don't feel like I need 15 hrs of sleep to function, I can think clearly, I have noticed my thinning/balding areas are not as noticeable (I am a 25 year old woman-I was very concerned). Constipation/Diarrhea I am still having problems with but have definitely noticed a correlation with what I eat. I also think I have issues with dairy, corn, and xanthan gum. When I eat dairy and corn my stomach is displeased to say the least. The xanthan gum makes me light headed, confused, my heart race, and very fatigued.

 

 I told the allergist that I have gone gluten-free (at that time it was about one month). He told me he is glad I am feeling better but suggests that I retest. In order to retest I need to eat gluten for one month. I really do feel that with my symptoms as well as my family history (dad-thyroid, mom-migraines, brother-digestive issues) that I...my family (more so brother and mother) could be celiac or at least have a sensitivity.( I have told them to get tested or at least try to go gluten free-they have not) However, I am in a position now where I need to continue gluten-free or go back to what I have started to consider a poison to get tested and hopefully get diagnosed...or not. From my understanding it is really hard to get a diagnosis. 

 

I am at a point where I am not sure if it is all in my head, if I am just crazy. Don't I need a doctor to tell me there is something wrong? When someone asks why can't I have gluten, " do you have celiac disease?". Uhh... I don't know. Even my own mother who has tons of true food allergies thinks I am going overboard being worried about contamination. 

 

My question is: Is it worth it to suffer for a month or more to get a blood test that may not be enough of a positive to get a straight answer? How important is diagnosis?

 

Thank you to anyone who reads my novel of a post, and Double thank you smiley face to anyone who responds. Any input is more than appreciated.  

[GottaSki]

Welcome aberlee!

 

Positive is positive -- especially when combined with a resolution of symptoms with removal of gluten.  The IgA test you mention -- was it the tTG-IgA and what were the ranges given?  Unfortunately many doctors only run that one test -- here is the complete panel:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

I highly recommend getting into see a gasterenterologist that specializes in Celiac Disease.  Having had removed gluten for six weeks can make it difficult to test as the antibodies measured are created when gluten is consumed.  Deciding to add gluten back in for testing - called a Gluten Challenge - is something you do need to consider and soon -- if you are unable to tolerate ingesting gluten for the challenge -- let your doctor know.  

 

Celiac Disease can cause malabosorption so having blood tests of nutrients can be an important part of the puzzle and let you know if you need supplementation while healing:

 

Vits B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc -- along with a CMP (complete metabolic panel) and CBC (complete blood count)

 

Read as much as you can -- it really helps the transition -- start here:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Hang in there

[1desperateladysaved]

First, I am coming from a super-sensitive perspective.  I also believe strongly that one is their own most influential health care provider.  I feel the day to day care for your health is the most important thing to care for physical health.

 

I had cut out gluten, before I found the forum.  I felt a great big reaction to going gluten free.  I felt awful.  I just didn't feel that I could go back to eating gluten ever again.  I did a genetic test.  One doesn't have to be eating gluten for that.  The test was super-positive.  I took that to an MD along with my belly that looked 5 months pregnant.  I told her about some of the changes which occurred when I cut out gluten.  She told me that I had celiac disease and NEVER to eat gluten again.

 

I desired more treatment then my MD could give.  I had some labs done for nutrient absorption and lo and behold I had mal-nutrition. This in spite of having cut out sweets and empty foods, and eating many garden vegetables. I had testing for other food antibodies and I had problems with nearly all foods.  All of my testing seemed to be consistent with the celiac disease diagnosis.

 

The final trial is always the diet and reaction to it.  IF those around you, or you will not accept this is valid, or you will ever tire of the diet and give it up, you may need to be tested until an undeniable conclusion is reached.  This may vary from person to person and doctor to doctor.  It is always better to know you have celiac disease when you have it.

 

As for me, I am not going to eat gluten to get a positive blood test or endoscopy.  I am going to try to gage healing my  nutrient absorption blood tests.  I cut out all of the foods I had anti-bodies for a rest, and am slowly trying them back in.  I have help from my chiropractor( trained in nutrition,) and a Functional Medicine practitioner. 

 

I hope you will get whatever definitive answers you need and soon. I hope you will avoid the challenge, but still get that answer if that is what you need. 

 

Diana

[ravenwoodglass]

If you had a positive blood test then IMHO combined with the resolution of symptoms gluten free you have your diagnosis. Only you can decide whether it is worth it to do a gluten challenge. A lot depends on your reaction to adding gluten back in. For some of us the reaction is so severe that a challenge can not be completed. For others they experience a level of symptoms that they can tolerate. If you do decide to consult with a GI make sure to bring your positive blood test results and a list of symptoms before and after starting the diet. My current GI would give you an 'official' diagnosis based on that but many others will demand a challenge and endoscopy. Do be aware that even with a challenge damage to the intestine can be patchy and get missed. The most important thing IMHO is how you feel off gluten and your reaction when you consume it either accidentally or on purpose. Your family may come around once you have been well healed for a while. My recovery was what got my family to agree to be tested.

[notme]

i would not do it.  in fact, my doc advised me not to because my response to the diet was so evidently positive.  she did the scope without me having to do a challenge.  i think a challenge would have had terrible consequences because i was already in bad shape.  in retrospect, i am pretty glad i didn't let gluten steal one more minute from my life.  i got a dx but at that point, i didn't really need one to be satisfied that i was at least ncgi because of how much better i felt on the gluten-free diet.  good luck

[cyclinglady]

I was diagnosed officially, my husband was not.  He's been gluten-free for 12 years now.  First year was the hardest, but he finally realized that gluten was not for him!  I just went in for a routine colonoscopy and presented with only Hashimoto's and anemia -- no gastro symptoms at the time.  I'm glad I had the endo because I think it will help my extended family.  My parents, even though I had allergies identified by a MD (and my brother has the same food allergies), and my husband felt better on the gluten-free diet, they just thought it was "all in our heads".  Sad, but true!

 

The only negative thing about the official diagnosis, is that I have a permanent "ding" on my health insurance record.  Since I'm self-employed, it has impacted my insurance rates (I could buy a new car every year for what we pay for insurance!)  My husband, on the other hand, has a "clean" bill of health per official records.  I"m not sure how Celiac impacts life insurance, but we purchased a policy long ago.  

[SasaMinks]

Im completely in the same boat! gluten-free for two weeks and I feel like a new person already - I can function without brain fog or insane fatigue at last!! Bloods were negative - but liver shows signs of being fatty - to do the endescopy id need to eat gluten again but im finding it hard to get people to take me seriously - my mother in law keeps offering me cake and saying 'oh god a little bit won't hurt!' but it will!! So like you im thinking should I seek a proper diagnosis or settle with my own opinion....

[taynichaf]

So I am brand new to this site, as well as the gluten free world for about a month and a half now. Why did I go gluten free? Well, for the past two years I have been having joint pain and odd food "allergies" that would come and go. I went to the doctors office last year and was sent to rheumatiodology then brushed off with a clean bill of health. I went again this year (different doctor, much better than the previous) she sent me to an allergist and talked to rheumatoidology for me. Rheumatiodology said my hands (dry, cold, changes colors, joint pain and stiffness that don't get better with use) are "interesting". The allergist basically told me that it cant be an allergy since it goes away (nothing I didn't expect), but wanted to do a blood test (just for funzies I thought). I basically went to the allergist to jump through one more hoop so my doctor would look down other avenues. However, when I got my results back my allergist told me it tested positive for the lab but it was still borderlined (IGA 21.45). He told me that he does't suggest a change in diet but he would like me to test again in three to six months.

 

I didn't even understand what gluten or gluten intolerance was until my results came back and researched it online. I was fortunate enough to stumble upon a blog where people described their symptoms. While reading this as well as some of the "text book" symptoms I decided to try going gluten free to see if I noticed a difference. YES!!! Yes I have noticed a difference! My hands have been better, I can smell (weird I know), I don't feel like I need 15 hrs of sleep to function, I can think clearly, I have noticed my thinning/balding areas are not as noticeable (I am a 25 year old woman-I was very concerned). Constipation/Diarrhea I am still having problems with but have definitely noticed a correlation with what I eat. I also think I have issues with dairy, corn, and xanthan gum. When I eat dairy and corn my stomach is displeased to say the least. The xanthan gum makes me light headed, confused, my heart race, and very fatigued.

 

 I told the allergist that I have gone gluten-free (at that time it was about one month). He told me he is glad I am feeling better but suggests that I retest. In order to retest I need to eat gluten for one month. I really do feel that with my symptoms as well as my family history (dad-thyroid, mom-migraines, brother-digestive issues) that I...my family (more so brother and mother) could be celiac or at least have a sensitivity.( I have told them to get tested or at least try to go gluten free-they have not) However, I am in a position now where I need to continue gluten-free or go back to what I have started to consider a poison to get tested and hopefully get diagnosed...or not. From my understanding it is really hard to get a diagnosis. 

 

I am at a point where I am not sure if it is all in my head, if I am just crazy. Don't I need a doctor to tell me there is something wrong? When someone asks why can't I have gluten, " do you have celiac disease?". Uhh... I don't know. Even my own mother who has tons of true food allergies thinks I am going overboard being worried about contamination. 

 

My question is: Is it worth it to suffer for a month or more to get a blood test that may not be enough of a positive to get a straight answer? How important is diagnosis?

 

Thank you to anyone who reads my novel of a post, and Double thank you smiley face to anyone who responds. Any input is more than appreciated.  

I suggest that you get tested! You might even need longer than a month of eating gluten:/ I did it too, for a month, all for a negative endoscopy!... But I think that if you dont get tested now, you will wonder the rest of your life. And the longer you go gluten free, the harder it will be to eat gluten and get tested. I know, it's hell... and you want to continue to feel better, but one month is nothing... Because then youll have your answer for the rest of your life! Also, I would get it just to prove it to your mom My mom has a hard time believing me as well.... AND if you end up testing positive, your family members are more likely to take it seriously and get tested or try the diet.

 

So, I believe that you should... One month goes by fast I remember the first day I scheduled my endoscopy, I didn't think I would make it a whole month! Lol. And now it seems like I just scheduled it yesterday.

 

Good luck

[srall]

My path was so similar to yours.  I had a host of health problems that the doctor would shrug off.  My mother had already been told to go gluten free by her GI a couple of years earlier, so based on that and another friend's advice (she had given up dairy, soy and wheat) I tried the diet for 30 days.  Well...the short story sort of picks up kind of at the same place you were.  An allergist I was seeing was fairly certain I had celiac disease and was encouraging me to go on gluten for 8 weeks...and I was like..."Forget it, lady"  I was feeling so amazing, I was actually dreaming that I was 16 years old (I was 42) and felt like shouting from the rooftops: "Gluten free saved my life."

 

I just could not do the gluten challenge.  Just couldn't face it.  And I knew no matter what the diagnosis I was through with gluten.  In some instances I think it would help to have the actual diagnosis (family of skeptical doctors) and I really wish I'd lied about the diagnosis from the very beginning.  But I didn't really understand celiac or gluten intolerance at the beginning.   I do tell people in restaurants that I have celiac, because I really believe that I do.  Just self diagnosed.   So...you're pretty young.  It might be convenient to have the diagnosis in the future, but since we don't need a doctor's prescription to eat what we eat, I just manage it on my own.  I cannot eat dairy or corn (same response as gluten) and only eat soy with sushi (gluten free soy sauce)

[aberlee]

Thank you everyone for your responses!!! I truly appreciate every one  . After taking all of your responses into consideration I asked my GP for a referral to a gastroenterologist. She said it sounds like a gluten free diet makes a huge difference for me and she would be happy to send me to a gastroenterologist. I plan to follow through and possibly do the gluten challenge if necessary. I am going to see how I react to a little bit of wheat flour this weekend to help determine if I will able to consume gluten if asked. If results come back positive, I will know for sure and be able have a stronger grasp on my health. If results come back negative, I will continue gluten free and and enjoy lower health insurance costs. 

And just in case my mother ever views this (or not) I just want to set the record straight she is very loving and supportive. She just doesn't understand why you can't just pick croutons off a salad and be fine.

 

Thank you all again!! All I have to say is there are a lot of tough gluten-free cookies out there! (I mean that in a good way )

 

[freeme808]

Hi aberlee,

     I think I might do what you just mentioned. I know my doc would send me to a GI too, he did mention it before after all. I think I just got so fed up with their medical system always giving me the run around...I was over it at the time. I found the most awesome alternative medicine doc, who helped me so much. He ran some blood tests to find out after all(I have claimed for over 10years!!!) that I am indeed anemic, and had a bunch of other deficiencies that my insurance never picked up, hence why they said they could never find anything wrong with me. My alternative doc got me better though....I had to a series of IVs full of iron, vitamins, and minerals. I can't tell you how much of a difference it's made in my energy. 

     I went gluten, dairy, soy, egg, and sugar free as soon as I started seeing him. Boy at the time, I couldn't be happier as I was so sick- I was rejoicing!  I also have Candida so I really have to really watch the sugar, which I found in most part harder to stay away from then gluten(its in everything!)...he said only fruit sugar is okay but in moderation. But I obliged because I once again, was so sick that it made it easier. 

     Well, about a month and a half into it of doing soooo well, I had to put my dog down.   That was so hard...I felt like I needed to go bungee jumping or something, just to distract me from the pain. But what do I do? I have a couple beers with my hubby! I guess I felt it was more out of respect and we just wanted to do a toast to her life. But did I stop there? No. I ate out. And that's when I crumbled. Just one more time, is what I would say, and "tomorrow" I'll stop. Well, a month and half later, I'm still going on and off of gluten. Boy have a I been suffering every time I do. You'd think I would of just stopped! In a way though, I was glad that I had it...it really confirmed to myself that I have a BIG problem with gluten. My rash(which I swear is DH), pops out in all its usual spots, I get nauseas, foggy, dizzy, exhausted,really bloated(instantly put on anywhere from 5 to 8lbs), constipated, and the list goes on. Actually, if its really bad...I feel like everything I eat just sits in my throat and I have a hard time swallowing. I finally know what everyone else was talking about.

    Hence, why I was looking at your post. This week, I stopped the gluten once again. It had been 3 days, and then yesterday...had a hot dog at costco. Then had pizza last night, since I figured I had already messed up!   Well, I woke up this morning feeling like I drank a 12pack of beer or something. It's crazy!! I know I have a very severe reaction to gluten...The way I've felt this last month, since I've reintroduced it....I know for a fact I've felt this way my whole life. But before knowing, I guess you just accept it and think your suppose to feel this way...you don't know any better. With that said, I'm willing to bet money on it that I have Celiac! I don't know if I should call my doc up right now and ask for the referral to the GI or not. Being that I have had gluten back in my system. Because I, like you, get very serious about cross contamination...especially if you go to the lengths of avoiding it at all costs, why let a little in.

    I think, based on my reaction...I might just self diagnose myself as Celiac. Is that wrong of me? I know my reaction is so severe...it's not really like I'm lying, lol. I guess I just want people to take me more seriously when Im out and about. Cause I found that, the most hardest thing for me is on a social level. I say I can't have gluten...and they say are you Celiac, or just stay away from it. They take you more serious. But I know, for myself, my reaction is serious. My alternative doc said if I had gone on, the way I did for a couple of more years, that I would have developed an autoimmune disease like Lupus, etc. I also know that my intestines are rock hard and extended...had an ultrasound, for a mass I thought I had, but where it was...he just said that was my intestines. THis is getting too long, sorry, but my alternative doc thought I had inflammation from and infection or something, which we did a detox to help that.(Although since I've had gluten...they're still rock hard and extended). I also found that one of my kidneys is slightly enlarged from that ultrasound, which explains the ache I feel from time to time.( I still have to do a follow up on that).

    Has anyone else self diagnosed themselves?? 

 

PS..if you got yourself through that, thank you!    I'm sorry it was soooo long!