Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Worth Getting Diagnosed?

Brrrandy

Recommended Posts

Brrrandy Rookie
Brrrandy
Posted

I've been gluten free for about six months a for the most part I've felt great. Lately, though, I've been in the process of moving coasts and moving into a new apartment, so I've been staying with friends, my parents, and eating out. It seems i've been "glutened"-- I've broken out into small itchy bumps after eating, headaches and muscle and neck pain, tiredness, had major stomach upset, constant burping and acid reflux, felt nauseous constantly to the point that I almost never want to eat and dread it.

It seems pretty clear to me that the problem comes from gluten. But now I'm so sick that I'm having doubts and worry that maybe I have something else going on and should go through the process of diagnosis with a gastro doctor.

My question is... Is it worth getting diagnosed? It might make me feel better to know, and i might take contamination issues more seriously if i had a diagnosis. but I've heard you can be denied insurance, etc. Also, I'm scared of what I might have to do-- will I have to eat gluten again to get a positive diagnosis? I don't know if I could put myself through that.

I made an appointment with u of Chicago gastro people, but will it just be a waste of time and money to go in if they can't test me because I've been gluten free?

Thanks in advance for your advice! So happy to find a place for support.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Yes, it would give you peace of mind. It would also give you an 'official' excuse not to eat some things :D (joking of course).

But, i've heard you have to eat some sort of gluten before being tested. I don't know if this is true or not but :( i wouldn't want to.

mushroom Proficient
mushroom
Posted

Yes, the testing after a gluten free period of six months would be pretty much a waste of time and money. You need to be eating a full gluten diet (equivalent to 3 to 4 slices of bread a day) for two to three months for the testing to be valid. In the absence of glulten the antibodies retreat from the bloodstream and your small intestine begins the healing process (foruntately for us, it does do that :) ) so the damage would probably no longer be sufficient to get a positive diagnosis.

It is normal when you resume eating gluten after being gluten free that you will feel worse than you did when your body was getting a steady dose of gluten and was more adjusted to dealing with it. That's why very few people make it through the full 2-3 months of a gluten challenge in order to get tested - it is just too painful.

On the other hand, if your rash turns out to be dermatitis herpetiformis, which is the skin form of celiac, it can be biopsied by a dermatologist by taking a sample of the skin immediately adjacent to an active lesion and examining it for celiac (your have to specify because they have to do a special staining). A positive DH biopsy is an automatic diagnosis of celiac disease. If you can bear to eat enough gluten to get an active lesion going for the derm. at the time of an appt. you may be able to get a diagnosis quite easily (if it is DH, that is). Do these itchy bumps form little blister heads? Do they leave scars when they heal. Because some types of DH do.

On the other hand, there is some value to not having the diagnosis when it comes to health and life insurance. It is all up to you whether you feel you can stick to the diet through thick and thin without the diagnosis (and through moves from coast to coast :D ) or whether you need that piece of paper to give you the motivation.

Brrrandy Rookie
Brrrandy
Posted
  • Author

Thanks so much! That's very helpful.

When I think of lesions I think of open wounds, do you mean to use it in that sense or in the broader sense? The bumps I've gotten have been tiny raised bumps, and almost look like a whitehead pimple, but watery instead of white, and smaller, all over my chest and stomach and back-- but they haven't blistered. But I also haven't even very much gluten. I'm wondering how severe it would need to be.

koolkat222 Newbie
koolkat222
Posted

I wouldn't eat gluten again just to get an "official" diagnosis. To me, it's just not worth it. I know that even a tiny amount of gluten does me in. I can't stand the thought of willingly ingesting any gluten. :o

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks so much! That's very helpful.

When I think of lesions I think of open wounds, do you mean to use it in that sense or in the broader sense? The bumps I've gotten have been tiny raised bumps, and almost look like a whitehead pimple, but watery instead of white, and smaller, all over my chest and stomach and back-- but they haven't blistered. But I also haven't even very much gluten. I'm wondering how severe it would need to be.

If the little bumps have a watery fluid in them they are blisters. Do they itch badly? DH usually itches and when the lesions heal they leave a purply scar that can take a long time to fade.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Hi there, I came here wondering if it was worth getting tested as well. I have a gastro appt next month but I'm ready to give up gluten right now. I'm trying to keep eating for the sake of accurate testing, but I sorta think testing is moot because I want to give up gluten regardless of their results just to be certain.

I'm not sure what the importance of testing is, except maybe to make sure it's in my medical record because I've been doubted by doctors a LOT and it will be safer in case I can't advocate for myself.

I don't intend on having children, so I don't need to know about passing on my illness, and I find medical testing a little too traumatic. Is it really that important to get tested?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hi Jennifer, and welcome.

There are two different ways to look at testing. One is the way that doctors look at it, and many patients too. The other way of looking at it is just for those who want to feel better.

Doctors want their scientific proof, so that they can put a label on you. And you can't have a label without evidence to back it up. Therefore, even if you have a positive blood test you have to have the endoscopy with biopsy too, because that is the "gold standard" of testing for celiac disease and confirms the diagnosis that (to them) is suggested by the positive blood test. They will then give you the piece of paper that says you have celiac disease. And some patients also need this piece of paper that validates their symptoms and the suffering they have been through. Everyone then says, x patient has celiac disease and must eat gluten free. If the patient doubts the need, they have the piece of paper. If the family doubts the need, the patient can produce the piece of paper. If the school doubts the need that little Johnny has to be gluten free, the piece of paper comes in very handy.

There is a downside to the piece of paper, however. If a life or health insurance company sees that piece of pape or you have to answer a question that reveals you have that piece of paperr, they can use it against you. Not all do, but it does happen. So not everyone wants a diagnosis of celiac disease in their file.

Then you come to the folks who have suffered for years and been told they had fibromyalgia and IBS and "head" problems, who have given doctors every opportunity to diagnose them that anyone can possibly think of. Finally, they figure it out for themselves :o And they stop eating gluten. And they feel better. And they go to their doctor and say guess what, I have a problem with gluten. And their doctor tells them they have to start eating it again so they can be tested :unsure: I mean, why didn't THEY think of this before :rolleyes: And the patient says, no way I am I going back to gluten, I know what's wrong with me, and I don't need a piece of paper that tells me I shouldn't eat gluten, my body has already told me that.

Now some of us fall in the middle of this continuum. They know they shouldn't eat it, have no intention of eating it, but they want the piece of paper anyway. These people are faced with a conundrum which I have set forth above. And it is something that each person has to decide for him- or herself. I am one of those who diagnosed myself and would never go back to, or continue eating gluten just to be tested. I figure the doctors had their chance :P But how you feel is how you feel, and you have to make this decision for yourself alone. If you're afraid of not being able to advocate for yourself you could always get yourself a MedicAlert bracelet and I defy anyone to deny you this or to ignore it :huh:

So this is my take on testing. Others here may well have some other opinions to offer. The more the merrier.

cahill Collaborator
cahill
Posted

Very well said Mushroom

Welcome Jennifer and Brrrandy

As you can tell by the previous post there are knowledgeable,caring ,and some what AMAZING people in these forums. :)

kareng Grand Master
kareng
Posted

I made an appointment with u of Chicago gastro people, but will it just be a waste of time and money to go in if they can't test me because I've been gluten free?

Thanks in advance for your advice! So happy to find a place for support.

This is from the U of Chicago website:

Open Original Shared Link

Call us Monday through Friday, from 9 a.m. to 5 p.m. central standard time at (773) 702-7593 with your questions. Most calls will be answered immediately, by a live person. Messages will be returned within 48 hours.

It used to be email to ask questions and I got a response right away. CAll & tell them what is going on. From my experience with them, if the person answering doesn't know, they ask the head of the Celiac program.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Thanks so much mushroom.

This place is a wealth of information. I'm so glad it's here!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,726
    • Most Online (within 30 mins)
      7,748
    Holly B
    Newest Member
    Holly B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

      I’d say celiac is likely.  Please continue to eat plenty of gluten until your endoscopy to be sure that any gluten-related damage can be seen.  Plus it gives you one last chance to enjoy your favorite gluten-containing foods. I hope the endoscopy/biopsies give you a definitive answer. 
×
×
  • Create New...