Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Should I Push The Issue With Doctor?
0

13 posts in this topic

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 diarrhea/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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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...... <_<:ph34r: 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. B)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Here's a guideline for testing: http://www.evelyntribole.com/uploads/Celiac_Testing_CDAC_PP.pdf

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined