So Mad!

[LuvMoosic4life]

I've been gluten-free since may with OBVIOUS improvement. My primary sent me to a G.I to see about celiac even though I am gluten-free. The G.I said its not worth putting me through the testing for celiac since I've been gluten-free for so long....

I went back to my primary today for a follow-up and he got VERY upset that the G.I refused to test me. Now he wants me to find another G.I to get tested even after I told him the tests would most likely come back negative; he kept disagreeing with me. He told me all I need to do is go on gluten for 2 weeks and get the biopsy. He agrees that the blood work would still be negative, but he said the biopsy would definitly show damage after 2 weeks of gluten...I disagreed.

I know about the gene test so I asked him (acting as if I didnt know)if there is a gene test I could get done to at least rule it out first and he shook his said and said "NO" !!!!!!!! WT--!!!! Then he went on to say something like "you are so young (22) and I really dont think by the symptoms you told me you have celiac (which btw were C, D, anemia, fatigue, bloating, foul extreme gas to name a few)- you have your whole life ahead of you and there is nothing you can eat b/c gluten is in everything...blah blah blah...you shouldnt have to go through all that if you dont have to"

OMG I was fuming!!!!, but kept my cool.

EVEN IF I DONT HAVE CELIAC I AM STILL FOLLOWING THE DIET!!!!!! I love eating gluten-free. People dont understand that. I have never felt better!! I never thought there would be a day that I would find the cure to my problem and that I would live the rest of my life bloated and miserable. I would much rather go through the "burden" of eating gluten-free than go through the humiliation and discomfort I went through before!!!!!

I dont know what else my problem could be if it isnt gluten sensitiviity/celiac. I mean, what would they do?? give me a medicine??? I REFUSE to take medicine. I KNOW gluten bothers me so I DONT EAT IT!!! and unlike the doctor said there are lots of things I can eat!! GGGRRRR!!!!

also, my blood results from my last test showed my hemoglobin was 13.8- it hasnt been that high in years!!!! I was so happy. and my bp was 100/70. except my potassium was low.....but at least I'm not anemic anymore!!! you think that would tell the doc something..but nooooooo....

anyone have any suggestions??? I just got this doctor, and I like him b/c he actually does care, but grrr!!! celiac is not his specailty!!!! lol. Would it even be worth calling the G.I doc back and telling him what my primary told me?? I mean.. my primary told me "well, the g.i is probably busy and just didnt want to test you, he isnt a diligent doctor" I guess I could at least ask him about the gene test.....ughhhh!!!!!! I would like to know if I have celiac too, but at this point its not so easy to get tested and get true results...

sorry I just spent hours venting about this to my mom!!! and I could still vent forever!!! this seems to be endless.....I had to hold back tears in the docs office

[MyMississippi]

Well,

If I were you, I would go back to eating gluten and be tested for Celiac--------

Cause I would always wonder" Do I have Celiac or not ? "

[ravenwoodglass]

You need to either find a new primary who will diagnose you by dietary response or perhaps educate the one you have. There are a lot of peer reviewed papers on celiac out there but that does not mean your doctor has ever read them. Print out some info from the NIH and PubMed and bring them over to him. Another route is perhaps you could go with enterolab and test for genes through them. Enterolab can not officially diagnose but can tell you which of the celiac genes you carry. Or, and this would be my choice at this point, you could just stay gluten-free enjoy your good health. You and your body know that gluten is poison to you, you don't need a doctors permission to be gluten free and if something else comes up later in your life being gluten free will not impact any testing for anything other than celiac. You could choose to do a challenge but as you already know 2 weeks is not long enough for an accurate result. It would need to be for at least a few months. If your reactions are strong that would be very painful and still no guarentee of a positive biopsy. Celiac is the only disease that doctors want us in the end stage before they will diagnose. Whether you want to go back to being that ill to have a doctor tell you what you already know is up to you.

[ShayFL]

That is right. It is totally up to you.

For me, even 2 weeks of vertigo and migraines is not worth it. I could care less about an official dx. I DID have the gene tests done though. I wanted to know if I even have Celiac genes. I do not (according to US standards). I have 2 gluten sensitivity genes. This is enough for me. Positive response to the diet plus 2 defective genes. Im good.

But you have to decide for yourself what will make you most comfortable.

[Fiddle-Faddle]

  MyMississippi said:

Well,

If I were you, I would go back to eating gluten and be tested for Celiac--------

Cause I would always wonder" Do I have Celiac or not ? "

Since the most accurate test for gluten intolerance (and I include celiac as a condition of gluten intolerance, obviously!), is DIETARY RESPONSE, you already know the answer. You can't eat gluten.

Eating gluten for only 2 weeks, as the original poster stated, is not enough time for visible damage to occur, so tests would most likely yield a false negative, so then you'd be back to square one--wondering.

The gene test can't rule it out, only rule in a strong likelihood. There are people on this board with biopsy-diagnosed celiac who lack the supposed "celiac genes."

[LuvMoosic4life]

thanks. yeah It's definitly not worth it seeing that i am still recovering even after 5 months. If I eat gluten now it will just throw my body off even more. The only thing I can think to do is call the G.I doctor and maybe he can call my primary and it explain to him. I thought the G.I doc was very good (unlike my primary said), I don't see why he wouldnt call him for me. They even said to call about anythiing and even called me back with a list of gluten free "C" meds. I was very suprised.

I just dont want to start anything between the doctors but I feel more doctors need to be properly educated on this.

[dilettantesteph]

When I researched it, it seemed like you had to eat gluten for 4 months to get an accurate test. To that I would say no way.

You don't have to listen to everything the doctor says. At some point they may develop a test that will be accurate without having to eat gluten. I am waiting for that. Doctors are supposed to heal, not make us feel worse.

If, at some point, you end up doubting the diagnosis, you can eat gluten and get tested then, I hear about so many false negatives. You could go through the pain of eating gluten and then get a false negative. Why do it just to make your uninformed doctor happy? If you feel better not eating gluten, then don't eat it. It is simple.

I talked to the genetic counseller at one of the testing places. She said that 30% of the population have the genes, but only about 1% have celiac. The tests are expensive and wouldn't prove that you have celiac.

The doctor is your paid advisor.

[ravenwoodglass]

  MSAU22 said:

thanks. yeah It's definitly not worth it seeing that i am still recovering even after 5 months. If I eat gluten now it will just throw my body off even more. The only thing I can think to do is call the G.I doctor and maybe he can call my primary and it explain to him. I thought the G.I doc was very good (unlike my primary said), I don't see why he wouldnt call him for me. They even said to call about anythiing and even called me back with a list of gluten free "C" meds. I was very suprised.

I just dont want to start anything between the doctors but I feel more doctors need to be properly educated on this.

It sounds like the GI doctor has basically diagnosed you. He may call but he will more likely write him or has already if he was a referral. Your primary doctor sounds like one of the ones for whom a gluten free diet is thought to be a fate worse than death. I ran into quite a few in my search for a diagnosis. I heard a lot of 'Well your blood test is negative, you should be happy as if it was positive there would be nothing you could eat'. But none of them told me about gluten or the high percentage of false negatives. None suggested the diet. The GI doctor on the other hand does sound like he knows what he is doing. He would be the one I would go to with celiac related issues until your primary becomes more educated. On your next visit with your primary I would bring a list of all the things we can eat. Perhaps if he learns more about it he won't be so afraid to diagnose folks.

[TracyB]

  MSAU22 said:

I've been gluten-free since may with OBVIOUS improvement. My primary sent me to a G.I to see about celiac even though I am gluten-free. The G.I said its not worth putting me through the testing for celiac since I've been gluten-free for so long....

I went back to my primary today for a follow-up and he got VERY upset that the G.I refused to test me. Now he wants me to find another G.I to get tested even after I told him the tests would most likely come back negative; he kept disagreeing with me. He told me all I need to do is go on gluten for 2 weeks and get the biopsy. He agrees that the blood work would still be negative, but he said the biopsy would definitly show damage after 2 weeks of gluten...I disagreed.

I know about the gene test so I asked him (acting as if I didnt know)if there is a gene test I could get done to at least rule it out first and he shook his said and said "NO" !!!!!!!! WT--!!!! Then he went on to say something like "you are so young (22) and I really dont think by the symptoms you told me you have celiac (which btw were C, D, anemia, fatigue, bloating, foul extreme gas to name a few)- you have your whole life ahead of you and there is nothing you can eat b/c gluten is in everything...blah blah blah...you shouldnt have to go through all that if you dont have to"

OMG I was fuming!!!!, but kept my cool.

EVEN IF I DONT HAVE CELIAC I AM STILL FOLLOWING THE DIET!!!!!! I love eating gluten-free. People dont understand that. I have never felt better!! I never thought there would be a day that I would find the cure to my problem and that I would live the rest of my life bloated and miserable. I would much rather go through the "burden" of eating gluten-free than go through the humiliation and discomfort I went through before!!!!!

I dont know what else my problem could be if it isnt gluten sensitiviity/celiac. I mean, what would they do?? give me a medicine??? I REFUSE to take medicine. I KNOW gluten bothers me so I DONT EAT IT!!! and unlike the doctor said there are lots of things I can eat!! GGGRRRR!!!!

also, my blood results from my last test showed my hemoglobin was 13.8- it hasnt been that high in years!!!! I was so happy. and my bp was 100/70. except my potassium was low.....but at least I'm not anemic anymore!!! you think that would tell the doc something..but nooooooo....

anyone have any suggestions??? I just got this doctor, and I like him b/c he actually does care, but grrr!!! celiac is not his specailty!!!! lol. Would it even be worth calling the G.I doc back and telling him what my primary told me?? I mean.. my primary told me "well, the g.i is probably busy and just didnt want to test you, he isnt a diligent doctor" I guess I could at least ask him about the gene test.....ughhhh!!!!!! I would like to know if I have celiac too, but at this point its not so easy to get tested and get true results...

sorry I just spent hours venting about this to my mom!!! and I could still vent forever!!! this seems to be endless.....I had to hold back tears in the docs office

I'm only going to comment based on my own fears - if you can call it that! I'm a mom and have 3 kids. For me, a proper diagnosis would be easier because it would alleviate any doubt about whether any of my kids have gotten a bad gene from me (in this case the celiac gene). That's my main drive right now - I'm extremely worried about my son at the moment and decided to find out one way or another "just in case".

That said - I can imagine how hard it would be to feel so much better now and then have to introduce gluten back into your diet and suffer the consequences. It's a hard choice.

Good luck with your decision - it's a toughie...

TracyB

[nora-n]

If you only want to know for yourself and your family, you can always do the enterolab testing, a stool test, and their gene test. It will show the ttg antibodies up to a year after going gluten-free as it is more sensitive than the blood tests. Right now you might still have positive IgG blood tests for antigliadin or ttg2. Those hang around much longer than the ordinary IgA versions of those tests.

the Enterolab testing does not diagnose celiac, as it is much more sensitive than the ordinary celiac tests.

Going back on gluten for a couple of weeks does not give you any positive biopsy results, it ma take years, and the abstract I found on pubmed said 6 weeks earliest in a case, and longer in the others, up to 72 months, and some never go positive on biopsies again.

My daughter gor diagnoses based on symptoms. Distinct symptoms and the whole story. Anemia, graves, much more.

They are testing out a new test where you have to go back on gluten for only three days, as only celiacs develop freshly activated T cells like that. But it only works if one is gluten free.

Hoggan writes here on celiac.com that a rectal challenge test works for people who have be gluten free for up to 6 months.

nora

[LIS-Guy]

It's a tough situation to be in.

If you go back to eating gluten, you may not do it long enough to get a positive test result, you'll end up being miserable for nothing, you'll still always wonder if you're Celiac, and on top of that no doctor will believe you because you'll have comfirmed their suspicions with a negative result. It may be better at this point just to stay gluten-free and be happy with your newfound health. I was fortunate to have found this forum before going gluten-free and thanks to the posters here I've stayed heavily glutened for my upcoming test. Even then, who knows if I will get a positive result?

LIS

[Fiddle-Faddle]

  TracyB said:

I'm only going to comment based on my own fears - if you can call it that! I'm a mom and have 3 kids. For me, a proper diagnosis would be easier because it would alleviate any doubt about whether any of my kids have gotten a bad gene from me (in this case the celiac gene). That's my main drive right now - I'm extremely worried about my son at the moment and decided to find out one way or another "just in case".

That said - I can imagine how hard it would be to feel so much better now and then have to introduce gluten back into your diet and suffer the consequences. It's a hard choice.

Good luck with your decision - it's a toughie...

TracyB

TracyB, if by "proper diagnosis" you mean a biopsy, you need to be aware that it only reads as positive if

#1) the doctor happens to sample an affected area. There are 22 feet of intestine; villi damage is often patchy, and invisible to the naked eye, and they only take, at most, four to six 1/4" samples.

#2) There is ENOUGH damage, even in patches, to qualify as a positive. Remember, before you have severe damage, you have no damage, then light damage, then moderate damage....it takes a while to cause enough damage to be visible.

#3) The doctor interprets the results correctly. Many here have had noticeable villi damage, but the doctor interpreting the results, while noting the damage, didn't think of diagnosing celiac.

#4) There are other causes of villi damage besides for celiac!

Also keep in mind that some celiacs have celiac--but little to no villi damage. People with dermatitis herpetiformis (an automatic diagnosis of celiac) do not always have villi damage, and many don't even have intestinal symptoms.

In other words, a biopsy, like genetic testing, can rule in the likelihood of celiac, but it CANNOT rule celiac out. You can have a negative biopsy and still HAVE celiac.

Positive dietary response is the most accurate diagnostic tool (with NO risk and NO side effects and NO cost to the patient) for diagnosing gluten intolerance/celiac. I don't think it's a coincidence that it does not make any $ for the doctors, for the insurance industry, or for the pharmaceutical industry.

[LuvMoosic4life]

  LIS_Guy said:

It's a tough situation to be in.

If you go back to eating gluten, you may not do it long enough to get a positive test result, you'll end up being miserable for nothing, you'll still always wonder if you're Celiac, and on top of that no doctor will believe you because you'll have comfirmed their suspicions with a negative result. It may be better at this point just to stay gluten-free and be happy with your newfound health. I was fortunate to have found this forum before going gluten-free and thanks to the posters here I've stayed heavily glutened for my upcoming test. Even then, who knows if I will get a positive result?

LIS

You are completley right with this. I just wish my doc would be content with the fact that I'm in very good health now (minus an ovarian cyst w/some pms complications) He has only been my doctor for a few months and really doesnt know my background even though I told him and can look at records. It just makes me mad. I stressed to him that all of my symptoms are gone, even my constipation which is what I just got over this past month, so why still test me?? it makes absolutley no sense b/c after I gluten myself for 2 weeks I would just go back to being gluten-free anyways!!! regardless of the results!! it doesnt take a rocket scientist to understand if something bothers you, dont eat it. It's just a-shame b/c everytime i see him he is going to bring it up. I'm almost debating getting another doctor and not even mentioning the whole ordeal with gluten lol. I will still have the same G.I in case I have any probs anyways....

[purple]

  ShayFL said:

That is right. It is totally up to you.

For me, even 2 weeks of vertigo and migraines is not worth it. I could care less about an official dx. I DID have the gene tests done though. I wanted to know if I even have Celiac genes. I do not (according to US standards). I have 2 gluten sensitivity genes. This is enough for me. Positive response to the diet plus 2 defective genes. Im good.

But you have to decide for yourself what will make you most comfortable.

Shay, I love your wisdom and answers, thanks.

That brings up a point of interest. You don't have Celiac genes but you do have "defective genes".

So I guess I am asking how come they are defective? Any thoughts on that? My dd is not a Celiac but is allergic or intolerant to wheat but it doesn't make her have any sick symptoms. She is almost 20 and seems like everyday of her life she had an ache or a pain somewhere but never sick. Even her toenails hurt one day!

Does something we do to our bodies cause the genes to become defective (like dementia) or something our mother did...say take drugs or be chemically toxic or who knows. If more and more people are allergic to gluten is it b/c "they" are tampering with our food supply. Or maybe its the immunizations? A million possibilities. Any thoughts or am I just crazy?

[ShayFL]

You may be crazy. But the truth is that we just do not know.

[LuvMoosic4life]

  ShayFL said:

You may be crazy. But the truth is that we just do not know.

how did you find out my secret?

[nora-n]

We are born with the genes, but the gene expression on the surface of the white blood cells (that is where the HLA genes are expressed) is upregulated by gluten ingestion. In old times grains did not have so much gluten. Here they even add gluten to bread, especially whole grain and dark bread, so they trigger a lot of upregulation of these HLA genes.

Even part of the DQ2 gene maeks you more prone to celiac, and there are DQ1 and DQ7 and DQ9 deliacs, leaving only DQ4. In Japan there are DQ9 celiacs since they are so many DQ9 there.

If you read articles on the subject, DQ7 and DQ9 differ from the celiac DQ8 gene by just one amino acid so they are able to present gluten to the immune system, but only one-tenth as strong. If one then eats ten times the normal amount of gluten, something might happen....

nora

[LIS-Guy]

Nice post Nora,

It just makes so much sense to me that autoimmune diseases like Celiac are so much more prevalant now. Not only is grain fairly new to us in our evolution (relatively speaking), but in the last 100 years cereal grains have exploded globally. We use them as filler in everything. Perhaps we've simply reached critical mass and these genes have been turned 'on'. Add to that the fact that we've polluted all of our resources, pump our food full of antibiotics, growth hormones, and other chemicals, and it's easy to see that our immune systems are already in overdrive. I really think we're just seeing the effects of our own actions.

Interesting stuff to ponder anyway.

LIS

[LuvMoosic4life]

  LIS_Guy said:

Nice post Nora,

It just makes so much sense to me that autoimmune diseases like Celiac are so much more prevalant now. Not only is grain fairly new to us in our evolution (relatively speaking), but in the last 100 years cereal grains have exploded globally. We use them as filler in everything. Perhaps we've simply reached critical mass and these genes have been turned 'on'. Add to that the fact that we've polluted all of our resources, pump our food full of antibiotics, growth hormones, and other chemicals, and it's easy to see that our immune systems are already in overdrive. I really think we're just seeing the effects of our own actions.

Interesting stuff to ponder anyway.

LIS

I couldnt agree more with this!! it makes me think of other things ( a bit off topic) but look at how fast dogs have evolved into differant breeds. (this was on The pbs nature show last week) There is no other animal on this planet that has evolved faster, and it's all b/c of human experimentation. Some dogs are bred so much that thier health is in risk. Certain traits are chosen for the breading process b/c they look good or are more favorable for dog shows, but in the end it really puts the dogs health in jeapordy b/c they arent naturally suppose to be that way (for ex. wrinkly skin, small stature). It's like humans eating so much gluten, we werent naturally suppose to just be able to walk up to a wheat plant and eat it.....we weren't designed to digest the grain...I strongly believe that we are only designed to eat foods that are able to be eaten in thier natural state....