Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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
      128,308
    • Most Online (within 30 mins)
      7,748
    Cindy Lou who
    Newest Member
    Cindy Lou who
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
×
×
  • Create New...