Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How To Self-Diagnose If Doc Will Not Run Tests
0

9 posts in this topic

I was diagnosed as Celiac about 10 months ago with bloodwork. I have 3 sisters, and after my diagnosis suggested that they each get tested. I sent them all links to websites with information about the disease (1 of them thinks it is very possible that she has it. None of us, even myself, have the 'classic digestive issue' symptoms). I know that at least 2 of them have asked their primary care doctor to be tested, but they live in rural areas and their docs don't think it is worth it since they do not believe they have enough symptoms. I have suggested to one of them (so far) that if they cannot get tested, they might eliminate gluten for some amount of time, and then challenge it and see how it goes. She sounded interested in the idea, so I thought I would do a little more research, and help get her started. I will also propose this to the others over the holidays.

1. If she does go this route, can anyone provide any details, like how long to eliminate gluten before reintroducing?

2. I am also curious about how diligent to be - I am still in the healing process so I do not eat anything that has been processed in a factory with wheat (at least not knowingly). I would think that giving up anything with gluten ingredients, but not worrying so much about CC or medications would make sense, etc - is that reasonable?

3. Any other thoughts, suggestions?

Thanks!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I suggest she find another doctor. For example, i had a nurse practitioner run mine. As for the cc thing, when you are trying to eliminate it, you need to remove every source, including what is in meds.

0

Share this post


Link to post
Share on other sites

Hi June27

I had a slow progression due to the fact I knew nothing about celiac and in hindsight am clearly a slow learner :ph34r: !

Have not eaten breakfast cereals since childhood or dumplings or yorkshire pudding as they would lay me out!

Went gluten light about 2 years ago (approx) after I was no longer able to eat pasta, pizza, porridge, sandwiches or naan bread.

(Would like to point out that for years I have felt best when eating nothing at all).

Have had DH since teens - so bit of a clue in hindsight :wacko: .

Felt loads better gluten light for about 6 months (avoiding most gluten generally but not totally) then a bit more crept in and I was really ill.

Found out about celiac and gluten and went gluten free.

I now consider myself in the super sensitive bracket.

I would imagine that gluten free (as per general newbie gluten free) diet for a month would have a significant effect but will leave it for those with more knowledge to give better answers to this.

0

Share this post


Link to post
Share on other sites

Sorry

Meaning a month gluten free and then challenge.

0

Share this post


Link to post
Share on other sites

Someone on this board (can't remember who, sorry) helped me with this last year and the advice they gave was really good (I had a negative blood test and no biopsy, so I am still not diagnosed technically).

I think this would work better for someone who has some symptoms they can use for diagnostic purposes though:

Quit ALL gluten for at least two months (this includes every last, little trace of gluten including shared equipment/cross-contamination, and this means that you likely will need to not eat out at all and prepare all food at home- it's only for 2 months).

Pay attention to the disappearance/improvement of any symptoms during the gluten-free phase. For me, personally, many of my GI symptoms were gone by the end of the second week (14 days in), and most symptoms gone by the end of the first month. Be aware that some people go through gluten withdrawal during this time, which can manifest as ataxia, vertigo, etc (this happened to me, but only lasted about 5 days).

After 2 months have gone by re-introduce gluten in a controlled manner: do not randomly start eating gluten-y junk food, or just any old food at a restaurant, but pick a few things (like regular bread, or cream of wheat cereal) and eat the equivalent of 3-4 servings per day for at least a week. This is so you can be as accurate as possible.

Pay close attention to any symptoms that might happen during the glutening phase: these can be GI issues, skin problems, sleep problems, depression, headaches, anxiety, etc.

If a full week has gone by and there are zero symptoms, then gluten might not be the problem...

This worked great for me because when I started eating gluten again it was very clear (within 3 days) that it was a problem for me... I kept eating it and the symptoms got worse and worse until I went gluten-free again on day 7 or 8. I could see a very clear progression of symptoms during the glutening phase and they all disappeared again after I quit gluten for good.

1

Share this post


Link to post
Share on other sites




Thanks - that is very helpful!

0

Share this post


Link to post
Share on other sites

I really hope the sibling would find a different doctor. Get the testing done, and then try a gluten free diet. If she needs medical later from this doctor, the doctor will not respect a "medical need" for a gluten free diet. There may be an excerbation of symptoms after ingesting gluten after a gluten free diet. This makes it virtually impossible for people to do a gluten challenge long enough for a proper diagnoses.

My daughter was put on a gluten challenge when she was 15 months old. She was hospitalized for dehydration after 2 weeks on gluten. She was too ill to have the scope done.

0

Share this post


Link to post
Share on other sites

I really hope the sibling would find a different doctor. Get the testing done, and then try a gluten free diet. If she needs medical later from this doctor, the doctor will not respect a "medical need" for a gluten free diet. There may be an excerbation of symptoms after ingesting gluten after a gluten free diet. This makes it virtually impossible for people to do a gluten challenge long enough for a proper diagnoses.

My daughter was put on a gluten challenge when she was 15 months old. She was hospitalized for dehydration after 2 weeks on gluten. She was too ill to have the scope done.

If the sibling is an adult and doesn't want to go searching for someone who will test because, apparently, there are many doctors who will not even do this unless you are seriously ill with Celiac symptoms, why would it matter at all if any doctor won't "respect" the medical need for a gluten-free diet? I really am having trouble with understanding why people are bothered by this?

My husband had some symptoms, some of which were anemia (rare in men unless they have a GI bleed), weight loss (serious), and low Vitamin D. He tried to have testing done twice and both doctors did incomplete testing and one did the wrong test, both blood work related. How much weight will someone allow themselves to lose and how anemic will you allow yourself to become before you say enough is enough and take matters into your own hands? He went gluten-free last year and within months the weight loss stopped and he just had blood work done and the anemia is gone. Vitamin D is still low but that takes time to correct itself and I think, he needs a higher dose. I asked him what he would say to the doc about following a gluten-free diet and he said that it really isn't any of the doctors business how he eats, which I agree with.

When someone has 1 diagnosed Celiac in a family, there will be others. I think that makes it easier to believe that, if you have symptoms, it most likely is Celiac and certainly if you do, a dietary trial will make that clear. I am impressed that the OP's siblings are interested in persuing this at all because that is not the norm in many families. It is harder to be tested than many know. And even then, they can screw things up badly.

1

Share this post


Link to post
Share on other sites

My sisters are all adults....

All 3 of them did ask their doctors to be tested, which tells me they are at least concerned that they might have celiac as well. I do think that testing would be preferable, but if they do not have a doctor that will order the test, and they are not motivated to find a new one, then doing a gluten challenge seems like a reasonable thing to do. It is ultimately their decision, and I am not one to lecture or tell people what to do.

Only time will tell if any of them actually try the gluten-free diet/challenge, but I want to at least give them the information if they want to do it. The one that is most interested lives in a house with a family member that is likely to be non-supportive, so I am hoping that she will have the strength to go through with it...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,655
    • Total Posts
      918,483
  • Topics

  • Posts

    • Food tolerance issues post-diagnosis
      I have an omelette every  morning and mix up the filling, different stir fried veggies, spinach, avocado etc.  Super nutritious and can keep me going all day if need be.   I went awhile after gluten-free before eating cereal and now I eat it with coconut milk, Tesco's own brand is nice enough. Maybe an option if you want to experiment with avoiding dairy for awhile whilst you heal? Best of luck!
    • Newly diagnosed and totally overwhelmed
      Hi!  I know I'll never forget the day I was told after an endo- and colonoscopy that I indeed had celiac disease.  I immediately went to a Trader Joe's grocery store and bought some gluten-free things to eat. about a month later I had a Total meltdown in my car outside a grocery store---feeling So Sorry for myself!   I cried and said I'll Never to able to eat what I want to again! that was 10 years ago and gluten-free foods have come a long way.... I love having a gluten-free everything bagel and delicious gluten-free 'Oreo cookies'----neither of which there were 10years ago. Everyone who has responded so far have Great Tips!  The best news is that your Diet will cure you!  I do not know of any other condition where this is true!! BTW---some of your friends and family Will understand and will make sure you aren't hung out to dry foodwise........and others just won't/can't understand and will think that just avoiding bread is enough..... Be kind, but don't risk your health to be nice to someone who forgot or doesn't understand. keep reading!  Keep trying different gluten-free foods to find what you like!   Best wishes!!  
    • Milling vs buying gluten-free flour
      It has never even been turned on. As I recall, it is capable of milling oats as well as popcorn. I don't know about coconut or other nuts but I can find out.
    • Milling vs buying gluten-free flour
      The very first question is.... Was that Retsel grain mill used for gluten before your diagnosis? If the answer is yes then the 2nd question is can it be COMPLETELY DISASSEMBLED and cleaned in every single nook & cranny? If the answer to that is no, then you can't use that grain mill because you will be continually cross contaminating yourself.  3rd question: Will that mill do things like coconut? The grains that are oily. Some mills won't. Better check that out. I got a NutriMill & it can not do oily grains or things like coconut. No oats as they're oily, same for nuts. Rice flour it does a great job on & gets it as fine as I can buy it.
    • Food tolerance issues post-diagnosis
      Boy, you've sure had a rough time of it! My heart goes out to you! I love your positive attitude about coping until your villi heal more. THAT is your greatest ally in this journey. Okay, now to your problems...... Your gut is still damaged. You aren't healed yet - you know that as you've stated it. It can be really wonky for the first 6 months to a year. It's like being on a roller coaster ride & you can have good days & sucko days & good weeks & weeks that are the absolute pits. My advice would be to ditch all the processed gluten free foods. You'll heal faster & have less problems eating "whole foods" --- fresh or frozen fruits & veggies, meats & dairy as long as you can tolerate it. Forget the corn flakes & rice krispies. They may be gluten free but it's still processed food & therefore full of all kinds of chemicals & preservatives & stuff you don't need. We always tell people to spend at least the 1st 6 months avoiding the processed foods. Time enough to get into those after you heal right? How about for breakfast you have a couple eggs, either fried or pan scrambled. Some fruit -- bananas, pears, whatever floats your boat, a glass of milk, some yogurt. You may need to have well cooked foods for a while & that means mushy veggies as well as fruit. From the sound of the extent of damage you had I would say that's where you ought to be at this point. You don't want to make things any harder on your gut than necessary for the time being. You do have one great big thing in your favor & that's your age. You're young & will by all rights heal up much faster than us old geezers who weren't diagnosed until our 50's, 60's & 70's after a lifetime of damage. Please read our Newbie 101 & follow the links contained within the threads. This will give you a ton of valuable information. Just click on it:  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,745
    • Most Online
      1,763

    Newest Member
    komac
    Joined