I Am Completely Discouraged!

[Sbwife14]

I've posted on other forums but I need to start here. I have all of the classics symptoms of gluten intolerance. I had celiac panel drawn and it was negative. My PCP is convinced I have a food intolerance. She referred me to a different GI doctor out of town wanting a colonoscopy and another EGD. My visit was today. She wouldn't run another celiac panel and said repeat EGD is not necessary and also said she sees no reason to have a colonoscopy. I could have a gluten intolerance but there is no test for that. She does not believe I have celiac. Instead thinks I might have intestinal spasms?? That does not explain my clear negative reactions when I consume gluten. This is the second GI doctor and neither seem interested in granting my requests! I just crIed after she left....I have no idea what to do next?? Except go back to a strict gluten free diet. I had been gluten light and avoiding foods that triggered huge responses of migraines!! Any advice? This is so frustrating!

[nvsmom]

If they aren't going to test you further, you may just need to go back on the gluten-free diet (not gluten-light) without a GI doctor's blessing.  Treatment is the same for celiac disease and non-celiac gluten sensitivity (NCGS) - the gluten-free diet.  Be strict with it.  If you are a celiac you can't have any gluten or you'll hurt yourself, and if you have NCGS you will negatively affect your health with small amounts of gluten.  Consider jumping in 100%.  You already know you feel better that way... No matter what the doctors think.

 

Best wishes.

[Tricia7]

While getting a diagnosis is ideal, even if they won't test you further just stay gluten free. My test was negative, but my reaction to eating gluten is too severe to even consider going back to it. Those tests have a high rate of false negatives. Do you have some reason you have to PROVE you can't have gluten?  I've heard people talk about how they need medical proof for work or school, or even to keep them strictly on a gluten free diet.

 

My complete migraine relief is enough to keep me 100% gluten-free. Not to mention all the other numerous other symptom relief I have had.  And while my primary care doc doesn't seem to understand celiac disease, and just marked that off the list when my test was negative, I've told him I am still strict gluten-free and all the benefits I have seen from it and he's supportive in that if it's working for me to keep doing it. (even thoughI can seem to convince him I could possibly have celiac disease) 

 

Bottom line is you're not alone. The average person with celiac disease takes years to get a diagnosis. Don't wait for it, if you're feeling better off gluten and worse on it, stay the course and do what makes you feel better.

[Sbwife14]

I guess what I was hoping from this visit to a second GI was more of a clinical confirmation that I do have a gluten intolerance and prove whether it is def not celiac or if it's NCGS. I don't need proof for work or school...just my own peace of mind. I went 100% gluten-free for 7 days when I connected my symptoms to possible Celiac and all of my symptoms disappeared. And I felt good! I guess I was hoping for something concrete from a doc standpoint. Migraines, foggy headed, inflammation and constipation are my biggest complaint...oh and sneezing after eating certain things. It's just very frustrating for me to actually do the research and trial and feel the difference and a specialist who is supposed to know about celiac is unwilling to even try to get answers. My negative labs were one year ago and why not biopsy?? Regarding food, one question I have is why things like pizza and noodles and white bread give me migraines but breaded things like chicken or eating a hamburger with the bun does not...eating baked goods like cookies, biscuits, cinnamon rolls makes me sneeze at least 10 times....it's all wheat flour and gluten...why are certain foods have worse reactions than others? She does have me staying off of gluten stating that I could be gluten intolerant but I do understand the only test for that is being gluten-free and see what happens. I did that and saw very positive results so I know I should stay on it. Just hoping for clinical diagnosis...*sigh*

[Sbwife14]

One of the main reasons I went is intermittently I also have attacks where I have bloating, excess GERD, gas and waves of epigastric pain. This all lasts for several days at a time when it happens. And I have an area in the upper abdomen around the pancreas that does not look right. It "pooches out and just looks odd". She never addressed this. We have a patient who is celiac and I asked her questions about her diagnosis and she mentioned her doc to her that her to school would never be the same again...that her "pooch " was a result of damage. So many unknowns. I was hoping for more answers.

[Sbwife14]

Oh geez auto correct is crazy! Her doctor mentioned to her that her stomach would never be the same, that her pooch was the result of damage to her intestines.......

[SMRI]

Being gluten-free for only 7 days and having all of your symptoms disappear is pretty amazing.  Obviously your body doesn't like something and if eating gluten-free makes you feel better, by all means, eat gluten-free.  If you had complete panels done twice, it is highly unlikely you have Celiac.  The false negative rate is very, very small and having tests done by 2 different doctors with the same results pretty much eliminates that possibility.  Whether it is Celiac or a gluten sensitivity really is irrelevant since the treatment is the same.  Stop eating gluten, feel better and move on.

[Sbwife14]

To clarify, I had one full panel. The second GI doctor wouldn't run a second panel. Nonetheless, I was amazed as well and I wasn't expecting it! I ate pizza after 7 days and had the worst migraine ever!!! I plan on eating gluten free because doc or not, I know how I feel. It's just incredibly frustrating!!!!

[BlessedMommy]

If you had a negative test and had all your symptoms resolve gluten free, just have the doctor diagnose you with non-celiac gluten sensitivity. That's still a diagnosis. 

[squirmingitch]

If you were gluten light or gluten free prior to your blood panel then that would have scotched the results. 

At any rate, you know how you felt gluten free so just go for it.

[notme]

false negatives on blood test are *very* common.  if you feel better off the gluten, no reason you need to eat it.  just eat a clean, nutrition-filled diet and don't worry about it.  honestly, i wish they would come up with a better test!!  one you wouldn't need to be eating gluten to be tested accurately.  that being said:  i wouldn't go back to eating gluten even if somebody told me i didn't have celiac.  that's what a difference this diet has made on my whole body  and my "pooch" is finally going away.  (whew.  thought i was gonna hafta work out there for a second lolz like i don't get enough exercise running up and down the stairs because i forgot what i went up there for....    )

[BlessedMommy]

I don't have a definitive diagnosis and if someone offered me a million dollars to eat gluten for 3 months I would refuse. LOL!

 

Seriously, you know your own body best. As an adult, you can choose what goes in your own mouth. People who really love you and care about you will support you.

 

Lots of people don't even understand what celiac is or don't care about what I do or don't have anyway. They just know that gluten gives me serious complications and makes me miserable.

[Sbwife14]

Thank you all so much! It helps to know I have a group of people that understands. I agree and I plan to be more strict with my diet. No lie...it's hard cause in the medical field I have to eat out a lot....and don't cook like I used to so I have a lot of changing to do to be successful!

[SMRI]

false negatives on blood test are *very* common.  if you feel better off the gluten, no reason you need to eat it.  just eat a clean, nutrition-filled diet and don't worry about it.  honestly, i wish they would come up with a better test!!  one you wouldn't need to be eating gluten to be tested accurately.  that being said:  i wouldn't go back to eating gluten even if somebody told me i didn't have celiac.  that's what a difference this diet has made on my whole body  and my "pooch" is finally going away.  (whew.  thought i was gonna hafta work out there for a second lolz like i don't get enough exercise running up and down the stairs because i forgot what i went up there for....    )

 

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Just for clarification, 1-2% test false negative and 1-3% test false positive.  It's not common.