Should I Push The Issue With Doctor?

[bigblue2007]

I am a 34 year old male currently dealing with dizziness/brain fog, balance issues, coordination issues with hands and feet, left knee joint pain, throat tightness (feels like lots of phlegm in throat), stomach cramps, muscular chest pain, dairy intolerance issues, low vitamin D and alternating between constipation and Open Original Shared Link/unusual stool that smells more foul than usual. My symptoms started in July/August with just dizziness and stomach cramps, but now as you can tell we have more issues.

I have been seen by my primary doctor who referred me to an ENT for the balance issues. The ENT/Otologist referred me to the Oto-nuegrologist who thinks I may have Migraine Associated Vertigo (MAV). I am going to the best ENT hospital in New England. I am on a Migraine Diet and do not see any difference. He will place me on Nortriptyline to help with the MAV next time I see him.

I have been tested twice for Lyme and it came up negative. Tested negative for the following test: Thyroid, Anemia (B12), Diabetes, and many other blood tests.

I have had a brain MRI, brain CT scan, vestibular testing (rules out ear issues), etc. All found no issues by the ENT.

I have had a Upper/Lower GI CT scan with Barium Sulfate with gastroenterology. No issues

I have had an EKG, echocardiogram, and stress echo. All test came out normal.

I saw an endocrinologist who tested me for the Vitamin D and Celiac Disease with the

Tissue transglutaminase antibody (tTG) test. the tTG test revealed I do not have Celiac.

Should I push the issue? Should I ask for a full celiac panel to be run and/or an

endoscopy?

I would appreciate anyones feedback. Thanks to everyone in advance.

[Takala]

Well..... you can do that, or you can just try going completely off of gluten for a time, say several weeks, and then reintroduce it, and see what happens.

There is such a thing as non- celiac gluten intolerance, it won't show up on the biopsy of the small intestine, but it does exist. And there are people, for whom the reasons are unknown, who just do not test out positive.

Then there are people like myself, who, when the "best" neuro in the area saw some test results indicating that I did indeed have a bona fide physical reason to be having [neurological issues, tried withholding the results and then denied them, including insisting that diet had absolutely nothing to do with it, and then had the office send me a letter saying that they wanted to discharge me from their (non- existent) care, if I continued to cancel appointments, after I busted them on it. The problem was, they were the ones canceling the appointments...... I will have been gluten free coming 10 years next year, in spite of them, thanks to other people who populated internet boards and wrote about experimenting with grain free diets for relief of symptoms. There are, in America, no shortages of specialists willing to relieve your insurance of payments running down wild detours.

If your self initiated "gluten challenge trial" yields positive results, you can then either seek a physician to work with you, or continue to torture yourself eating gluten..... usually us neuro symptom peeps are so highly motivated, we don't have to be formally diagnosed with anything to stay off of it. My current PCP humors my menu choices - he saw the MRI's.

[Cara in Boston]

My son's blood test was negative but his biopsy was positive. My blood test was positive but my biopsy was negative. We are both feeling much better gluten free.

You can push for more tests (sounds like maybe you didn't get the full panel the first time?) but really, those could come up negative and lead you to believe that gluten is not the problem. A more accurate test would be to try the diet for 3 months. Be as strict as you would if you had been given a diagnosis. See how you feel (keep a symptom diary and record in it daily). If you are right, you will be rewarded with better health and feeling good. If you are wrong, no harm.

You don't really need a diagnosis of celiac disease - you are an adult and you are in charge of your own diet (unlike children who might eat at school or summer camp and depend on adults to keep them safe.) Some doctors will give a diagnosis on the basis of your response to the diet. Some only go by the endoscopy.

My son was diagnosed with Celiac Disease. I was "technically" diagnosed with "gluten intolerance". It is clear we both have celiac disease.

Cara

[julissa]

about a year ago my symptoms started getting pretty unbearable, I had no idea what was wrong. I would get dizzy/nausea out of the blue, and it was interfering with my life as you can imagine. I saw several doctors and 2 GI docs. many tests were run, including a biopsy for celiac. everything came back negative, and was constantly told there was nothing wrong with me.

fast forward a little over a month ago, I decided after lots of research to go gluten free. with the exception of one time when I accidentally glutened myself, I have never felt better.

I am gluten intolerant, and now that I know, I can try to eat in a way to keep these symptoms gone. I don't need a doctor or a diagnosis to know this is the life for me.

good luck!

[Marilyn R]

I'd push for more testing. The blood tests are unreliable at best. I didn't pursue diagnosis a few years ago and regret it.

[JDThornton]

I have very similar symptoms, and have been given similar tests (4 MRIs, 3 CAT scans, and 2 EEGs, among others). I got three different diagnosis from a number of doctors, the most popular of which is migraines, as you said. I am pushing, primarily because my neuro and GI symptoms have affected my work a lot this year, and I would like to be able to show my employer a diagnosis that tells them I'm not making things up.

Isn't it funny how everyone thinks you're a hypochondriac when your symptoms are "invisible"?

I think the final choice is up to you. I have an allergy test scheduled for the 19th, immediately after which I will be going gluten-free. I have an appointment set with yet another doctor in January, but my symptoms are getting out of control, and I've decided not to wait to see him to go on the diet.

Best wishes to you, and I hope you'll keep in touch about your decisions and your success on the diet, should you choose to do it.

Good luck!

[bigblue2007]

I feel the doctors are starting to think I am nuts. They haven't said it, but they want to chalk it up to anxiety and migraines, etc. I am not sure if I am ready to accept those answers.

I have very similar symptoms, and have been given similar tests (4 MRIs, 3 CAT scans, and 2 EEGs, among others). I got three different diagnosis from a number of doctors, the most popular of which is migraines, as you said. I am pushing, primarily because my neuro and GI symptoms have affected my work a lot this year, and I would like to be able to show my employer a diagnosis that tells them I'm not making things up.

Isn't it funny how everyone thinks you're a hypochondriac when your symptoms are "invisible"?

I think the final choice is up to you. I have an allergy test scheduled for the 19th, immediately after which I will be going gluten-free. I have an appointment set with yet another doctor in January, but my symptoms are getting out of control, and I've decided not to wait to see him to go on the diet.

Best wishes to you, and I hope you'll keep in touch about your decisions and your success on the diet, should you choose to do it.

Good luck!

[bigblue2007]

Thanks to everyone with their feedback.

[bigblue2007]

I have not had the full panel... Only one test.

My son's blood test was negative but his biopsy was positive. My blood test was positive but my biopsy was negative. We are both feeling much better gluten free.

You can push for more tests (sounds like maybe you didn't get the full panel the first time?) but really, those could come up negative and lead you to believe that gluten is not the problem. A more accurate test would be to try the diet for 3 months. Be as strict as you would if you had been given a diagnosis. See how you feel (keep a symptom diary and record in it daily). If you are right, you will be rewarded with better health and feeling good. If you are wrong, no harm.

You don't really need a diagnosis of celiac disease - you are an adult and you are in charge of your own diet (unlike children who might eat at school or summer camp and depend on adults to keep them safe.) Some doctors will give a diagnosis on the basis of your response to the diet. Some only go by the endoscopy.

My son was diagnosed with Celiac Disease. I was "technically" diagnosed with "gluten intolerance". It is clear we both have celiac disease.

Cara

[ravenwoodglass]

I have not had the full panel... Only one test.

You need to have your doctor do a full panel as well as a total IGA. After all celiac related testing is done then give the diet a shot for at least a couple months. Also find out if there were any UBOs on your MRI of your brain. Many neuros don't know they are diagnostic of celiac that is attacking the brain.

[nvsmom]

I too would do a bit more testing just because I find it much easier to cut out convenience foods when I have "proof" that I must. I got so used to my symptoms that they weren't a driving factor for me to change my usual diet.... I probably would have cut my gluten down, but now it is completely out of the house so my kids are gluten-free too even though they tested negative (2/3 have shown great improvements in behaviour and health after a couple of months though).

I also wanted to mention that I was surprised to find that gluten caused almost all of my migraines, so if they think your symptoms are caused by migraines, they could be right... and gluten could be at the root of it all. I used to have migraines for at least a couple of weeks per month, and then there were also days when I felt no pain but my vision was jumping around (which my eye doctor told me is actually a migraine aura). Gluten was affecting my head for a good 3 weeks per month. At almost 6 months gluten-free, I now get a migraine for maybe 1-3 days a month.

The tests to look for are:

ttg IgA and IgG

total serum IgA (and possibly IgG)

DGP IgA and IgG

IgA EMA

There's a couple more and I can't remember what they are for the life of me. lol

Good luck!

[CaliSparrow]

Here's a guideline for testing: Open Original Shared Link

I went on a very gluten-free diet for a few weeks (no restaurants!) and then ate Thanksgiving stuffing. Went back on gluten-free the day after Thanksgiving because, holy moly, the symptoms came barreling in much to my surprise. My world was turned upside down for the next very sick few weeks as I knew very little about Celiac before then. In order to be tested, I've been told to eat three pieces of bread a day for a month before starting.

Because of my autoimmune-like symptoms, I'll probably suffer to get tested since I also have severe anemia & Vitamin D deficiency and have been ill for many years. Not sure if it's Celiac or gluten sensitivity but 100% sure it's one of them. I was recommended a doctor who specializes in Celiac. All the websites say to get tested before going gluten-free because the tests are inadequate without eating gluten (except for genetic testing which can only rule it out). Now I understand why so many people opt out of testing once they make this discovery. It's hard to eat something that you now know makes you sick and why not just eliminate it period. It becomes very apparent.

I now have a dietitian who didn't want to influence my decision but who said the difference between a gluten sensitivity and Celiac is, with GS, you can decide to eat Aunt Betty's b-day cake & suffer the consequences knowing the symptoms will pass whereas, if you have Celiac, you're doing damage to your body by eating it. Many people here don't need a diagnosis and just say no regardless. Who wants to mess with being so sick even if you love Aunt Betty?! People with Celiac have to be careful about cross-contamination and whether or not dishes are washed in a separate dishwasher away from dishes with gluten on them. I became sick again after eating a gluten-free meal in a restaurant :/. I don't want to think about the frustration I'll feel if I go through testing with negative results. That's a lot to go through with the risk of having false negatives and STILL not knowing.

It's a difficult decision. If you decide to be tested, find a specialist so you aren't questioning the doctor's expertise along with everything else. So far, it all seems to be quite the quagmire. Good luck and hope you find your path to good health soon!

[bigblue2007]

I saw the Gastroenterologist and he wants to do a Colonoscopy and Endoscopy which one of things he will look for is Celiac Disease. It will be on the 25th of Jan. We shall see soon.