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How Do I Start With A Dx
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4 posts in this topic

I am not sure how to start this journey.  I ended up here after doing a 2 week detox as a jump start to turning my health around. As I tried to add back in grains (quiunoa, rice, etc not wheat), I soon had inflammation,  edema, and muscle aches. My GI symptom is constipation unless I am heavy on the magnesium citrate.
I had allergy testing about 20 years ago when I suspected peanuts were causing migraines. I remember testing positive for histamines and chicken (yeah who does that?)  Peanuts do cause migraines and dairy causes horrible eczema. I suspect a gluten allergy/sensitivity caused my edema six years ago (my right calf often looks like I have a major DVT going on —just the right one.) I now have a DX of lipedema with possible secondary lymphedema.
 
So my question is: What do I do to get DX? – I have read about the DNA testing, but if I get that then what? How do I find a doctor who knows what to do? who will respect the testing and get me to where I need to be? I am struggling as I feel if I say "gluten sensitive" without a doctor's note I will be accused of jumping on the media diet sensation bandwagon.
 
Any advice would be welcome.

I live in the central Ohio area and have excellent insurance.

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I am not sure how to start this journey.  I ended up here after doing a 2 week detox as a jump start to turning my health around. As I tried to add back in grains (quiunoa, rice, etc not wheat), I soon had inflammation,  edema, and muscle aches. My GI symptom is constipation unless I am heavy on the magnesium citrate.
I had allergy testing about 20 years ago when I suspected peanuts were causing migraines. I remember testing positive for histamines and chicken (yeah who does that?)  Peanuts do cause migraines and dairy causes horrible eczema. I suspect a gluten allergy/sensitivity caused my edema six years ago (my right calf often looks like I have a major DVT going on —just the right one.) I now have a DX of lipedema with possible secondary lymphedema.
 
So my question is: What do I do to get DX? – I have read about the DNA testing, but if I get that then what? How do I find a doctor who knows what to do? who will respect the testing and get me to where I need to be? I am struggling as I feel if I say "gluten sensitive" without a doctor's note I will be accused of jumping on the media diet sensation bandwagon.
 
Any advice would be welcome.

I live in the central Ohio area and have excellent insurance.

 

It will all work out.... I started out so overwhelmed because I felt like I needed a diagnoses as well... Now I just want to be positive that I do not have celiac disease, but after the testing i'm going gluten free for life....

 

Just start by making a simple doctors appointment, and just tell them your symptoms. Tell the doctor what you think the problem is and how you figured that out. Also, if you are eating gluten free blood tests will not be very accurate. I'm sure someone will post the right things to test for, because I don't know them off hand... But DEMAND they be done! My last two doctors appointments, I showed them specific tests I wanted done, but they didn't do them..... so now i'm going back to a different doctor, will all my previous tests and I am not leaving without the right tests! Lol, sorry, still a little angry with the doctors..

 

I'm new to this, but I have done a lot of research and asked many questions on this forum, so feel free to message me if you have any questions, or if you just need to vent about this! :)

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I had no idea that gluten intolerances cause migraines until I went gluten-free. I used to have migraine 5-15 days a month. The type where moving your eyes or changing directions hurt your brain. I now only get a migraine a day or two a month.

 

Celiac disease is in about 1% of the population. It is an autoimmune disorder that is exacerbated by gluten; it causes many many symptoms and nutritional deficiencies, as well as the defining symptom of flattening of the small intestinal villi. Non-celiac gluten intolerance (NCGI) is a newly recognized disorder that causes the same symptoms in 6-30% of the population, minus the villi damage. There are currently no blood tests for NCGI; only a positive reaction to the gluten-free diet is diagnostic.

 

The blood tests for celiac disease are:

  • tTG IgA and tTG IgG (tissue transglutiminase) - most common test
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test and good for diagnosing early celia disease
  • EMA IgA (anti-endomyisal) - very specific test that is positive when damage is extensive
  • total serum IgA - a control test to ensure IgA levels are high (5% of celiacs are deficient in IgA and will test negative)
  • AGA IgA and AGA IgG (anti-glian antibodies) - older, less reliable test being phased out by DGP

You need to be consuming 1-4 servings of "glutenous" foods (ie. bread slices) per day for 4 or more weeks (6 is often cited) to have accurate tests. Do not go gluten-free until testing is complete. I advise doing blood tests before a gluten-free trial for NCGI - once feeling better, it is very hard for some to eat gluten again, and some react even worse than before.

 

Any GP could order those tests.

 

Genetic tests simply show if you have the genes to acquire celiac disease, not if you have it. I think somewhere around 30% of the population have the most common genes associated with celiac disease but only 1% of the population gets celiac disease... And I believe there are a few board members around here who had negative genetic tests but who are diagnosed as a celiac. It's unusual but not unheard of.

 

I don't know much about genetic testing. I'm sure someone else will be along to help with that.

 

Most celiacs will have an endoscopic biopsy to confirm positive blood work or to explore further if unexpected negative blood results occur. Some people skip the biopsy - depends on the doctor and patient.

 

Nutrient tests are helpful as many celiacs are low in calcium, ferritin, iron, potassium, B's, and D. Thyroid testing is often a good idea too as hypothyroidism is more common in celiacs. Thyroid tests include: TSH, free T4 and T3, TPO Ab.

 

Whew... that's everything I can think of. Now I should stop procrastinating and get back to work.  LOL

 

Welcome to the board. :)

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It will all work out.... I started out so overwhelmed because I felt like I needed a diagnoses as well... Now I just want to be positive that I do not have celiac disease, but after the testing i'm going gluten free for life....

 

Just start by making a simple doctors appointment, and just tell them your symptoms. Tell the doctor what you think the problem is and how you figured that out. Also, if you are eating gluten free blood tests will not be very accurate. I'm sure someone will post the right things to test for, because I don't know them off hand... But DEMAND they be done! My last two doctors appointments, I showed them specific tests I wanted done, but they didn't do them..... so now i'm going back to a different doctor, will all my previous tests and I am not leaving without the right tests! Lol, sorry, still a little angry with the doctors..

 

I'm new to this, but I have done a lot of research and asked many questions on this forum, so feel free to message me if you have any questions, or if you just need to vent about this! :)

Thank you so much. I am trying to figure out is it worth it to push for testing and dx. The only benefit I can think of is some tax savings...and  a "you really can't do this" mindset

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/  
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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