Don't understand my results, can someone help?

[Kerissajane]

Hi everyone, 

I have been feeling pretty sick now for about 5 months. Finally my boyfriend made me go see a doctor, which I did. My first doctor did a full blood panel and tested me for h pylori - panel came back normal, negative for h pylori. She then referred me to a GI doctor who ordered a full celiac blood panel. Everything came back normal except for one test - he said the max was a 5, and I scored a 6. He didn't clarify which test it was, but from research I think it's the ttg-igg test? 

He then scheduled me for an endoscopy and colonoscopy. He found inflammation only in the stomach - nonerosive gastritis - and this was the only area he biopsied.  I just got a call today from the doctor who said the biopsy results were normal, and told me to just take anti-acid pills for a few months then see how I feel. 

He never addressed what this meant? So do I have or not have celiac? If I don't, I have already taken anti-acid pills, I don't want to live on them forever... I'm having a hard time accepting that just anti acid pills will make me feel better .. They help with the bloating and sensitive stomach (literally can't put any pressure on my belly) but not the nausea, night fevers, and vomiting. 

Can someone pls help me make sense of my doctor's vague instructions/responses to my testing? 

 

Thank you! 

 

[Go2GFGirl]

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hope to hear back on your results.

[cyclinglady]

I am sorry that this is happening to you.  Your best bet  is to obtain copies of all your lab and biopsy reports and post them here (with ranges).  Someone can interpret them.  We are not doctors, but can help based on our personal experiences with celiac disease and NCGI.  

[Meta4icalme]

Kerissajane,

I suggest you contact the Dr and "ask him directly to clarify" whether or not you have Celiac Disease. Or you can call the Gastro's office you saw for your biopsy evaluation and they can answer your question on the phone.

Your Dr is responsible for your medical questions and answers. When he isn't being clear enough then it's your turn to take control of getting him to clarify. Remember he works for you. 

Here's hoping you don't have Celiac Disease and that its just acid upset! Good luck ?

[ravenwoodglass]

Since your doctor didn't do any biopsies of your small intestine there is no way to know if you do or do not have celiac. Do post your test results as we can help interpret them.  If you don't plan on any further testing for celiac you can do a strict trial of the diet. If you are going to want more testing  (second opinion?) don't drop gluten yet.

[bartfull]

1 hour ago, Go2GFGirl said:

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hi Go2, and welcome to the forum. I agree about the apple cider vinegar. (Diluted in water of course). A lot of folks with reflux or heartburn think that would be the worst thing they could do but it really helps.

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

Hope to hear back on your results.

 

[sheelahdog]

None of my tests (always incomplete) ever came back positive, but had issues my whole life.  Doctors kept telling me it was this or that - and then that it wasn't this or that but something else.  I tried to go gluten free by eating gluten free processed foods and it was a disaster for me.  My breakthrough came when I went on the specific carbohydrate diet (no grains, starches, sugars, lactose ...) because someone told me it would help my inflammation and pain.  It made a huge difference! My gut was so damaged, it needed time to heal.  The next time I tried a little gluten 6 months later (a pinch of the sacrament bread at church) I ended up throwing up blood.  So after a quick upper scope two doctors told me i was gluten intolerant and never to eat it again.  I never looked back.  I am so glad I kept trying when the doctors didn't know what it was.  I feel so much better!  I figure it doesn't really matter if or when you get an official diagnosis.  Try and find what works and then do that.

[Go2GFGirl]

15 hours ago, bartfull said:

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

I absolutely agree, 3 months is preferable to 2 weeks....I just know personally from the people in my life who want to go Gluten Free don't have the will power.  I say 2 weeks as a trail because it's just long enough to make a worse reaction when you try to eat gluten after the 2 weeks.  As you said though...3 months ...or forever is much better.  I just know not everyone has the willpower and self-control to resist their favourite gluten filled treats.

As everyone has been mentioning....if you are planning to have more testing or seek a 2nd opinion....don't go off gluten yet.  If you are satisfied with your results and want to make a life change with changing your diet to gluten free and move on....then just go gluten free.  If you are just gluten-intolerant....going gluten free is enough. If you have celiac (as I do personally) ....going off gluten isn't enough. To repair the damage done to the small intestine you need to cut out ALL grains and processed sugars. They cause inflammation and are not healing your small intestine.

 If you have any more questions, feel free to ask....But I would suggest getting clear answers from your Doctor.

[Kerissajane]

I really appreciate everyone's feedback. I might try the apple cider vinegar, I've heard it does actually help. 

I'm traveling and the doctors office wants to charge me to put the results online so I'm going to wait and pick them up for free when j get back from out of town - in about 2 weeks. 

I'll post them then! Starting to wonder if I should also get a second opinion. 

My intuition tells me this is not just a case of gastritis. Two days before my procedure I attended a friend's baby shower and ate cake and all other sorts of gluten containing foods and got very sick - like when you get food poisoning - that woke me up in the middle of the night. I was hovering over the toilet for 2 hours, it was horrible. No one else got sick!! I didn't even eat a lot.. No alcohol, no meats, etc. 

Anyway, ill be back on here with results as soon as I get them! Thanks again