How To Self-Diagnose If Doc Will Not Run Tests

[june27]

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!

[shadowicewolf]

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.

[Lady Eowyn]

Hi June27

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

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 .

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.

[Lady Eowyn]

Sorry

Meaning a month gluten free and then challenge.

[peeptoad]

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.

[june27]

Thanks - that is very helpful!

[mommida]

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.

[Gemini]

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.

[june27]

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...