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How Do I Start With A Dx

harley1200

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harley1200 Newbie
harley1200
Posted
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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taynichaf Contributor
taynichaf
Posted

 

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! :)

nvsmom Community Regular
nvsmom
Posted

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. :)

harley1200 Newbie
harley1200
Posted
  • Author

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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