Do I really need an endoscopy ?? Can I NOT have celiac?

[cdiaz0517]

Hi everyone! Brand new here !! Still trying to figure out how this all works So, a few months ago I started feeling absolutely terrible. Muscle Pains, palpitations and tingling sensations, as well skin sensitivity and rosacea. I did not notice at the time that it was related to food until I had a few "poisonings" that I thought came from shellfish. I have always suffered from severe C but never D. Anyways.. I was incredibly sick for about 3 months and I got tested for everything under the sun: even lyme disease, toxoplasmosis etc. Then I got a brain scan that showed I had T2 non specific white matter lesions that could be consistent with MS ( which of course scared me A LOT) These were seen by 3 neurologists who thankfully ruled out MS, but also did not give me a reason for them.

Interestingly enough, I got a 23 and me test kit as a gift for Christmas, and when it came back, it showed I had a variant in the HLA-DQA1 which increased my chances of developing celiac. When I saw that it was like a light bulb came on immediately !! .  I just knew that it had to be related to gluten at that point. So, I went to at least 3 doctors who completely dismissed me ( one said those tests were not accurate at all , another said my symptoms were psycosomatic and refered me to a psychiatrist.. ) until finally I had one doctor send me for testing. Upon finding my ttg A elevated and the EMA positive, she refered me to a gastroenterologist to get more tests.

This gastroenterologist sees my husband for his Chron's Disease and he is very good for that, but when I showed him my ttgA result and the EMA, he said he did not believe I had Celiac because I did not have D, only C, which put his celiac's expertise in question IMHO.  ANyways, he repeated all the tests, and added more including genetic testing. Below are the results.   

He now says he is sure I have celiac but won't give me the diagnosis unless I get a biopsy to confirm. I asked, "so what else could the tests mean?" and he said, " I'm sure you have celiac, but I need the bipsy before I impose this lifelong diet on you " My insurance is not very good and it will cost me over $1000 to have this done, which is steep for me at the moment. I know that it is a personal choice and I am not looking for any medical advice, but I want to know people's opinions on wether you guys think it is really necessary. All my tests seem to point to Celiac's direction and makes me wonder if maybe I should look for another doctor, or just start on the gluten-free diet, ( I've tried to lower my gluten consumption but still kept eating it to prepare for the endoscopy" ) Or wether I should get it done to establish a baseline. I worry that the exam will be a false positve, seeing how unacurate they can be, and also lowering gluten could maybe alter it ?  Finally, if anyone knows a Dr in the Miami / Fort Lauderdale area that specializes in Celiac I would reallly appreciate it

Sooo sorry this got soo long, but i appreciate any advice

TEST RESULTS: 

TISSUE TRANSGLUTAMINASE IgA - 9  Ref: <4 

TISSUE TRANSGLUTAMINASE IgG - 15  Ref: <6 

GLIADIN (DEAMIDATED) IgA - 21 Ref:  <20

GLIADIN (DEAMIDATED) IgG - 38 Ref:  <20

ENDOMYSIAL ANTIBODY SCR AMD (IGA) W/REFL TO TITER Positive

ENDOMYSIAL ANTIBODY AMD TITER - 1:5  Ref: <1:5

IMMUNOGLOBULIN A: 135 Ref: 81-463

HLA TYPING FOR CELAIC DISEASE: 

        •HLA DQ2: POSITIVE

        •HLA DQ8: NEGATIVE 

•HLA VARIANTS DETECTED:

         HLA DQA1 : 02

         HLA DQA1 : 05 

         HLA DQB1 : 0202 

         HLA DQB1 : 0301  

[Ennis-TX]

It is your choice to get it done or not, ask your doctor if he will put in your records with the testing that is already done. If yes then go ahead and start the diet.

Your tingling, muscle issues, and constipation are all signs of a common issue with this disease, magnesium deficiency. Due to the C you should take the Citrate Version. Natual Vitality Calm, you need to dose to tolerance, and a scale is a life saver. Start with 1/4tsp (1-2g) and up it that much per day til you get loose stools (or just full dose if you do not want to dose to your needs) Once you reach your loose stool levels knock it down 2grams or 1/4-1/2 tsp and they become regular. We each have our own levels our bodies need. And you will probably be able to reduce as you heal.

[cdiaz0517]

Thanks! I'm just trying to know if maybe not getting it would make it harder for me to get any treatments or just be taken seriously by doctors. Thanks so much for the Natural Vitality Calm. I will def follow up on that

[tessa25]

Huh, you failed every test. I'd say (not a doc) celiac. If you go 100% gluten free and your numbers go down you have your proof. I don't know how much of a hassle it is to not have an official diagnosis.

[lisas11lisa]

Due to insurance issues..I DID NOT have an endoscopy in the beginning..Dr also 99% sure its Celiac Disease..I went gluten-free ..over 6 years ago..my symptoms stopped unless I get accidentally glutened... your choice..but you eventually need one to monitor you..Gluten isn't good for anyone..but you have to Completely stop!(I will never..knowingly..ingest gluten again.).Goodluck.

[plumbago]

Having the endoscopy is the "gold standard" for Celiac diagnosis. If it shows villous damage, that means you have celiac disease. I had this done, and I'm glad I did because I'm the kind of person who needs that extra proof. Can you call your insurance to make extra sure that it is indeed not covered? If that is difficult, sometimes doctor's offices or clinics have case managers who can help you with that task. Such people are experts on insurance plans.

I do not know a lot about the genetic markers, but perhaps someone else does, someone who might be able to comment on why one came back positive and the other negative. And more to the point, if having one of two positives for celiac disease negates the need for an endoscopy. If that is the case, that's good news (not to need the endoscopy, I mean).

Plumbago

[Gemini]

It's nice to see that not much has changed with these dopey doctors.    From a common sense perspective and information gleaned from medical journals, a positive tTg and especially a positive EMA, that is a slam dunk for Celiac.  Add to that your other positives, plus a positive genetic test, at this point, you do not need an endo for diagnosis. Your doctor, and many other's, like the money they make from doing them.  You also do not need an endo for follow-up, unless you are having problems or not healing well.

I had the same results with my testing......I failed all tests by huge numbers and had the same results from genetic testing.  I ended up with a double DQ-2 from the great genetics in my Irish family.   You have Celiac so the decision to have the endo is entirely up to you. I did not have one because I presented with classic Celiac and had all those positives.  I have never looked back, never cheat on the diet which is not hard to do and had a complete turn around with symptoms, once I started the gluten-free diet.  Mind you, it took 3 years total as I was diagnosed at age 46, but my health is far better than it ever was while eating gluten.  Good luck!

[pikakegirl]

So sorry you are having physician trouble. I did have 3 positive biopsies but still get the "are you sure you have Celiac?" from drs. They have never been of help to me except ordering my Iga, Igg, crp, ana and vitamin panels. All of which i have to list and ask for yearly. I just keep changjng drs until i find a compliant one. None of them research or understand Celiac. That being said there are great books and sites like these that have helped me in my healing and management. I have learned to rely on myself and trust my instincts. Best of luck in your healing.