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lookingforanswers17

Please Help Me. I'm Desperate And The Doctors Keeping Blowing Me Off

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I have suffered from what i believe to be symptoms of celiacs for over a year. back pain, abdominal pain, bladder pain and a host of other symptoms. the doctors have basically given up and just blown me off. They said I have ibs and now they have me on anxiety medicine which hasn't helped. I am anxious but only because all of the other health issues i have experienced. so far nobody has tested for celiacs other than a stool test that showed an off the charts reaction to gliadin. How can I get help? I'm so tired of being so sick and in pain and getting nowhere with the doctors. I'm so desperate to feel better. I'm not looking for a miracle... just to feel normal again... if thats possible. I refuse to give up until I get answers. I'm just so tired of fighting to get them.

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Have you started being gluten-free, dairy-free, and to be safe, soy-free yet?


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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I too have suffered for years. I was told I had IBS when I was 14 and that was it. My doctor blew me off. I am now 33 and still suffering. My young son was dx with Celiac Disease and many food allergies including wheat, egg whites, peanuts, corn, and soy a few months ago. It was like a light bulb went off. Maybe that's what I have too!! I had the blood tests for Celiac and they were negative. But, no one told me that I had to stay on gluten for the tests to be positive. I had gone gluten free with my son for about 2 months prior to my testing. When I brought this up to my doctor he again blew me off (I am changing doctors by the way). I called an allergist and have an appointment to see if I have food allergies like my son. Have you considered allergy testing?


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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so far nobody has tested for celiacs other than a stool test that showed an off the charts reaction to gliadin. How can I get help?

Have you requested the Celiac panel? If your own doctor isnt willing to order the tests....then find another doctor who will. You are the patient....the doctor is working for YOU. I dont see why they would deny you testing....especially when they havent found a cause for your "IBS".

If you plan on doing any testing make sure that you do NOT start a gluten free diet until after all of the tests are completed.

The only treatment for Celiac is the gluten free diet. You can start that at any time.....with or without a diagnosis.


Rachel

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I suggest going to a good alternative medical doctor. We have an osteopath. He diagnosed my daughter allergic to gluten on the first visit. I thought she had endometriosis.


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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It may be time to just give the diet a try. Some of us are very difficult to diagnose, in part because up to 30% of us will show negative on blood work and often once they see a negative blood test the subject is closed in the doctors mind. Your doctor should have no problem ordering the celiac panel, in fact you shouldn't even need an appointment he can call in the lab order or you could pick up the slip. After they have drawn the blood, IF you don't think you are going to want a biopsy you can then go gluten-free. The true test of whether the diet is needed is your response to the diet. Being on the diet will not mask other disorders and will not effect test results for any tests other than the ones for celiac. You don't need a doctors permission to be gluten free.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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If I cant get the tests I want from a doctor, I order my own. If you can afford it, there are many labs online that you can get tests through without a prescription. I use DirectLabs and HealthCheck.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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It may be time to just give the diet a try. Some of us are very difficult to diagnose, in part because up to 30% of us will show negative on blood work and often once they see a negative blood test the subject is closed in the doctors mind. Your doctor should have no problem ordering the celiac panel, in fact you shouldn't even need an appointment he can call in the lab order or you could pick up the slip. After they have drawn the blood, IF you don't think you are going to want a biopsy you can then go gluten-free. The true test of whether the diet is needed is your response to the diet. Being on the diet will not mask other disorders and will not effect test results for any tests other than the ones for celiac. You don't need a doctors permission to be gluten free.

I'm new to all this and had a question. I just had routine bloodwork done which all came back normal. Would celiacs show up in routine bloodwork or do I have to specifically request blood work for it?

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I'm new to all this and had a question. I just had routine bloodwork done which all came back normal. Would celiacs show up in routine bloodwork or do I have to specifically request blood work for it?

No....it does not show up in routine bloodwork. There are specific antibody tests for Celiac.....so yes...if you would like to be tested you would need to request the panel.

These are the tests....make sure you get all of them. They need to test the Total Serum IgA in order to make certain the tests arent false negative due to IgA deficiency.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

My own personal opinion is that its important to have the tests done prior to starting the diet. The reason for this is because many people do not have Celiac Disease.....but are gluten intolerant as a result of other underlying health conditions.

If you forgo all testing and still suffer from unexplained food reactions or symptoms down the road...you will not know if you're dealing with Celiac, some other condition, or both. Alot of people end up in this situation when they choose to initiate the diet without doing any testing.


Rachel

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No....it does not show up in routine bloodwork. There are specific antibody tests for Celiac.....so yes...if you would like to be tested you would need to request the panel.

These are the tests....make sure you get all of them. They need to test the Total Serum IgA in order to make certain the tests arent false negative due to IgA deficiency.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

My own personal opinion is that its important to have the tests done prior to starting the diet. The reason for this is because many people do not have Celiac Disease.....but are gluten intolerant as a result of other underlying health conditions.

If you forgo all testing and still suffer from unexplained food reactions or symptoms down the road...you will not know if you're dealing with Celiac, some other condition, or both. Alot of people end up in this situation when they choose to initiate the diet without doing any testing.

Even though I agree with you that it is essential to do all the tests before starting the gluten-free diet, we all know that you can never be 100% sure it isn't celiac disease, even if all the tests come back negative, because they aren't nearly as reliable as the medical establishment would like us to believe.

So, even if the tests come back negative, it can still be celiac disease. Only if the gluten-free diet doesn't resolve all the health problems are there other issues that need to be dealt with. But people can still be gluten intolerant rather than have celiac disease without anything else causing symptoms.

Other health problems aren't always responsible for being gluten intolerant, even though they can be, as you obviously found out.

It is fact that gluten in the amounts that are in todays wheat aren't good for anybody.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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No....it does not show up in routine bloodwork. There are specific antibody tests for Celiac.....so yes...if you would like to be tested you would need to request the panel.

These are the tests....make sure you get all of them. They need to test the Total Serum IgA in order to make certain the tests arent false negative due to IgA deficiency.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

My own personal opinion is that its important to have the tests done prior to starting the diet. The reason for this is because many people do not have Celiac Disease.....but are gluten intolerant as a result of other underlying health conditions.

If you forgo all testing and still suffer from unexplained food reactions or symptoms down the road...you will not know if you're dealing with Celiac, some other condition, or both. Alot of people end up in this situation when they choose to initiate the diet without doing any testing.

Are stool tests reliable. I did not specifically get tested for celiacs but they did test for many things with a stool test. the only thing that came back abnormal was a reaction with gliadin. I believe the scale was from 0-20 with 20 being high. I scored a 41. The test was done through metametrix. just wondering if this is in anyway an indicator of celiacs. They said it was a marker for celiacs but not a definite that I had it. No further testing was done though.

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in part because up to 30% of us will show negative on blood work and often once they see a negative blood test the subject is closed in the doctors mind

This is so true. I listened to a doctor speak at my support meeting the other night. She will not diagnose a patient as celiac unless they have a positive blood test and flattened villi. My first thought was, how many has she turned away with celiac?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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So, even if the tests come back negative, it can still be celiac disease. Only if the gluten-free diet doesn't resolve all the health problems are there other issues that need to be dealt with. But people can still be gluten intolerant rather than have celiac disease without anything else causing symptoms.

This is true....but I still feel that forgoing any testing and jumping right into the diet can complicate matters down the road. If someone does not resolve all of their symptoms (which is all too common around here) then they will have many unanswered questions if they chose to skip all of the testing. They will either have to go back on gluten for several months...OR...live with the unanswered questions (and we see plenty of people struggling with that here).

Since we do have tests available....in my opinion it doesnt make sense to forgo them for the diet....which may or may not have the desired results. Then there is the confusion (if things dont resolve completely) as to whether or not Celiac is really the problem.

Alot of that confusion can be avoided by having the tests run BEFORE initiating the diet.

Yes...its true that the tests arent 100% reliable....most tests arent perfect and the Celiac tests arent any different. There are some who will have false negative results....but in my opinion this is not reason enough to forgo all testing. For the most part the tests are fairly accurate.....and obviously if someone is not genetically susceptible they are not likely to have positive results....even though they may have gluten intolerance.

Since MANY conditions (unrelated to Celiac) can lead to gluten intolerance....I'm not at all saying that the diet is not beneficial when Celiac tests are negative. I reccommend that EVERYONE try the diet regardless of test results.....however, if one wishes to know whether or not they have Celiac Disease...then they should be tested for that....and it needs to be done prior to initiating the diet.

If it were true that EVERY person posting here had Celiac Disease as a cause for their symptoms....then I could see where testing would not be an important factor.

However, since we know that not to be the case....and we know that many people start the diet only to have more questions down the road....I dont think its neccessarily the best choice to bypass all testing. Essentially in doing so we are making the assumption that Celiac Disease is *the* answer.....and unforuntaely....it often isnt.

So even though we cant be 100% sure it isnt Celiac Disease if tests are negative....I'd say that if bloodwork, endoscopy and gene testing are ALL negative...the chances of having the disease are pretty slim.

If I hadn't had all of that testing done....I guess I would be sitting here not really sure of anything. :unsure:

Just as you say that we cant be 100% sure when tests are negative....the same is true if we do not get tested at all. We cannot be 100% sure we have Celiac if the tests were never run.....and if health is not fully restored while on the diet. In my opinion.....the chances of coming to a conclusion are greatly increased when we do all the necessary testing...which includes the diet...but only after all other tests are completed.

Self diagnosing often leads to many unanswered questions.

Other health problems aren't always responsible for being gluten intolerant, even though they can be, as you obviously found out.

Some non-celiacs actually are unable to digest gluten because the necessary enzyme is deficient....or inhibited by some other factor. This would be an example of gluten intolerance....with no additional health problems.....and symptoms can resolve when gluten is eliminated.

This group of people can actually overcome that problem by supplementing the neccessary enzymes which are essential for digestion of gluten.

Of course if they come to the conclusion that they have Celiac Disease....without having any testing done....they would never really know the true cause of their problem....and this is especially true when the symptoms arent completely resolving.

I feel very uncomfortable suggesting that someone try the diet without having the tests run. Once the tests have been completed....I have no problem recommending the diet regardless of negative test results. But I cannot (in good conscience) recommend skipping the tests....I cant make the assumption that someone has Celiac Disease....especially when I'm fully aware that other conditions can cause the same symptoms.

The fact that gluten HAS to be in the diet for several months prior to testing is an important factor. A person who is gluten intolerant (whether they have Celiac or not) is going to suffer if they have to reintroduce gluten at a later date...for the purpose of testing. All of that misery can be avoided by having the tests done BEFORE starting the diet.

Once that it out of the way a person can eliminate gluten and see how well they do. If symptoms resolve completely......they can come to their own conclusions....even if the tests were negative. However, if the symptoms DONT completely resolve....they wont need to torture themselves by having to go backward just to get the Celiac tests done....instead they can proceed with looking into other possibilities.

It just makes sense to have the testing done first.


Rachel

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It may be time to just give the diet a try. Some of us are very difficult to diagnose, in part because up to 30% of us will show negative on blood work and often once they see a negative blood test the subject is closed in the doctors mind.

I think having all of the tests done (not just bloodwork) is important. I dont think that 30% of Celiacs will show up negative in all testing (bloodwork, biopsy and genetic testing).....and if they do....then they most likely do not have Celiac.

Not having DQ2 and DQ8 reduces the possibility of Celiac Disease significantly. Having negative bloodwork, negative biopsy AND negative gene testing...pretty much rules out the disease.

Of course these people can still react to gluten...however, it would not be due to Celiac.


Rachel

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Are stool tests reliable. I did not specifically get tested for celiacs but they did test for many things with a stool test.

No....a stool test is not considered to be diagnostic for Celiac. Antibodies can be detected in stool for reasons other than Celiac Disease. The stool tests are only indicative of gluten sensitivity....but not Celiac specifically.

So while you *can* have these elevated antibodies due to Celiac Disease.....you can also have them for other reasons...including leaky gut. This is why they told you that it was a "marker" for Celiac.....but not a definate diagnosis. If you would like to know whether you have Celiac....you would need to have the tests that are specific for Celiac.

After that you can proceed with the diet and see where that takes you.


Rachel

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I have suffered from what i believe to be symptoms of celiacs for over a year. back pain, abdominal pain, bladder pain and a host of other symptoms. the doctors have basically given up and just blown me off. They said I have ibs and now they have me on anxiety medicine which hasn't helped. I am anxious but only because all of the other health issues i have experienced. so far nobody has tested for celiacs other than a stool test that showed an off the charts reaction to gliadin. How can I get help? I'm so tired of being so sick and in pain and getting nowhere with the doctors. I'm so desperate to feel better. I'm not looking for a miracle... just to feel normal again... if thats possible. I refuse to give up until I get answers. I'm just so tired of fighting to get them.

"then find another doctor who will. You are the patient....the doctor is working for YOU."

Way to go Rachel! :)

You are empowered, don't give your power to the doctor, change doctors. Rachel is right, the doctor is working for you. Let your insurance company know that he is not meeting your needs and request another doctor from the list. Ask them if they can recommend someone who works in the area of Celiac/gluten sensitivity. You have a right to good medical care, and a say about what happens to you.

I'm sorry you're so miserable. I think you're getting good advice here...hang in there! :) Linda


Results June 2008

Antigliadin IgA 14 (Range <10 Units)

Antitissue Transglutaminase IgA 12 Units (Normal<10 Units)

Malabsorption 647 Units (Normal <300 Units)

HLA-DQB1 Allele 1 0301

HLA-DQB1 Allele 2 0604

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

Anti-Soy IgA 30 Units (Normal <10 Units)

Quit Gluten May 2008

Quit Soy June 2008

Quit Dairy May 2009

Quit Corn June 2009

I believe in God, Angels, and Miracles! :) And Photography of course!!

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I do not think one can rule out celiac due to negative tests, if the person has symptoms while on gluten, and some kinds of malabsorptions.

I read that wheat allergies never have malabsorption, only gluten sensitivity or celiac.

I had those negative tests.

I need more thyroid meds while on gluten, and more hydrocortisone, and I get neurological symptoms on gluten yet my tests were negative. The tests were done inrrecrly, I was almost totally off gluten. Then I was only back on gluten for five weeks and no blood tests were repeated, I only had endoscopy. Afterwards I got the neuro symptoms back, and during the challenge my skin burnt all the time again. I was hungry the whole time. I had to increase thyroid meds to oneanahalf tablets of 125


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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I am going to the doctor this week to request testing for celiac disease. Hopefully this will the beginning of my road to recovery and feeling better. I'm excited about the testing but scared in a way that it will come back negative and I'll be left with no answers again as to why I am so sick. It's been over a year since all my symptoms started. Hopefully they can figure this out. Thank to everyone for the advice. I will keep you posted as to what the doctor says and does.

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I am going to the doctor this week to request testing for celiac disease. Hopefully this will the beginning of my road to recovery and feeling better.

Good luck....let us know how it goes. :)


Rachel

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