Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

How Do I Start With A Dx

harley1200

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...