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Not Sure If I Have Celiac Or Gluten Sensitivity

Meggielynn13

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beebs Enthusiast
beebs
Posted

He is a total idiot - get a new Doctor or go gluten-free, heaps of your symptoms are the same as mine, all gone since going gluten-free. I also tested negative on the bloods - and my reaction to eating gluten is life threatening -go figure :blink: But at least my doctor says - your bloods were neg but your symptoms are severe and there is no way you aren't celiac. No official diag - but all my doctors know that I am. You need to have someone who gets it - and your doctor just doesn't! You poor thing! BUT - light at the end of the tunnel hey? You are here- so you suspect its this and soon you will know either way!

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beebs Enthusiast
beebs
Posted

PS- my liver function tests were always totally whacked before I went gluten-free. And mouth full of ulcers. Severe GERD etc....sounds so similar to me:(

IrishHeart Veteran
IrishHeart
Posted

Please, please ask to see Dr. G in the practice!!

This guy is no help to you.

PM me--I think we should talk on the phone, hon. :)

AVR1962 Collaborator
AVR1962
Posted

So today's appointment was a waste of my time and that is unfortunate :(.

The first thing he goes into is so, I think you're lactose intolerant. How can you know that from my bloodwork that doesn't even mention a test for lactose intolerance. I have also known that I have been that way for 3 plus years. He then says something which is really stupid I think you should stop drinking milk and try a lactose free diet now, I haven't had milk in 3 years and he knows that from my file. I only eat cheese without lactose, soy and almond milk, and yogurt none of which have lactose.

Then he goes into my celiac panel and liver bloodwork. so the test you came up positive on is one of the older tests and is really irrelevant in today's day and age. The positive marker that came back shows that you could get it sometime in your life. at this point I'm ready to jump over the desk and smack some sense into him :-X . If it was irrelevant, why would the lab use it and I believed that this test was one of the newest (dgp iga). And then he wants to send me for lactose intolerance testing, which I declined because I know the answer is yes and then he is sending me for the third ultrasound on my right side in less than a year. And then I have to go back to see him once I try the lactose trial and the ultra sound comes back. Then he said we could look at me going gluten free which he pretty much doesn't think I can do cause its sooooo hard according to him.

At this point I'm just gonna do the gluten free diet once I go back to see him even if he says not to cause I know my body better than him. This whole situation is really working me up but i just have to do what's best for me especially since I found out i'm doing my internship for school in Disney in a year. Can't really work in the parks or really anywhere and have to go to the bathroom 10 times in an 8+ hour shift.

Thanks for listening everyone and thank you to all that have given me advice. I really appreciate it cause no one understands around here other than my boyfriend :)

Good for you! How frustrating to sit on the receiving end at your doc appt. Let us know how things go for you on the gluten-free diet.

heidi g. Contributor
heidi g.
Posted

Yea those issues you have sound like gallbladder problems! I get them too! Well hopefully your doing better. I'm 21 so I know how much it probably sucked!! But if your endoscopy results came back negative it is possible you have a gluten intolerance. If there was no damaged villi, then it was all gallbladder problems. It can have really similar symptoms as celiac and other Gi issues.

Meggielynn13 Rookie
Meggielynn13
Posted
  • Author

I had my gallbladder out in 2011 so that is why they are looking into it being celiac disease. I know I have it because of my symptoms and the test results. My symptoms stopped temporarily after I had my gallbladder taken out but returned shortly after. I just can't wait to call my doctors group later today and go to see dr gusten. We'll see how many times I need to tell them I need to see him or I'm moving elsewhere with this.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

False negatives in bloodwork happen 20-30% of the time. I've never heard of a false positive.

If the Dr. doesn't know how to read the test, they aren't going to be helpful to you.

I got genetic testing. I got my results over the phone. I was told it was negative for Celiac. I couldn't believe it because I get severe gluten reactions. I didn't waver from the gluten-free diet because I know it bothers me.

I went and got copies of the test results I had in December. The genetic test said equivical..not negative.

I finally found a site that explained the Celiac/gluten sensitive genes. It turns out I have DQ2.2. My Dr. didn't know how to read the blasted test! :blink:

Keep pushing for answers.

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Meggielynn13 Rookie
Meggielynn13
Posted
  • Author

I just called to switch doctors cause I'm sick of getting the run around and they told me they have to put a request in with both doctors. They ask me why and I said I need a second opinion. This is just not acceptable. I'm paying for health insurance and 50$ an appointment, I should be able to see who I want to. I have a feeling I'm gonna get a call with a big fat no as the answer for this. I can't wait :(

researchmomma Contributor
researchmomma
Posted

I just called to switch doctors cause I'm sick of getting the run around and they told me they have to put a request in with both doctors. They ask me why and I said I need a second opinion. This is just not acceptable. I'm paying for health insurance and 50$ an appointment, I should be able to see who I want to. I have a feeling I'm gonna get a call with a big fat no as the answer for this. I can't wait :(

This is the same thing I have run into. But let me tell you this....even if you change docs within the same group it won't help. They back each other up. My pediatric GI won't let me change docs within the group and it wouldn't matter if I did because she would tell them her opinion and they would back her.

It stinks. I really don't get the medical community's reluctance to test and understand Celiac. I would LOVE it if we could run a national study where we asked Docs to test all of their patients with multisystem complaints...the ones they consider whiners and hypochondriacs. I bet a lot of them would have Celiac. Then if they don't test positive, recommend a gluten free diet for 6 months to catch NCGI....hmmm...how I wish.

zeeclass6 Explorer
zeeclass6
Posted

Have you been tested for thyroid problems? And I don't just mean TSH. TSH is actually quite meaningless. You need to get: TSH, Free T3, Free T4, Reverse T3, and BOTH sets of Thyroid antibodies.

Some of the symptoms you describe are thyroid symptoms or auto-immune thyroid symptoms.

Here are two great books you may want to read that will inform you about this:

"Solved: The Riddle of Illness" by Stephen Langer, MD

"Stop The Thyroid Madness" by Janie Bowthorpe (there is also a website and very active facebook group with a gluten-free facebook sub-group.

IrishHeart Veteran
IrishHeart
Posted

This is the same thing I have run into. But let me tell you this....even if you change docs within the same group it won't help. They back each other up. My pediatric GI won't let me change docs within the group and it wouldn't matter if I did because she would tell them her opinion and they would back her.

Actually, I was the one who suggested she ask for a different doctor in the practice because he is MY doctor and he is the best and not one of the "old guard". I am not so sure he would just back him up as you suggest. He is more enlightened than most.

If she waits to see another doctor in this area, she'll be waiting about 2 months AND remaining on gluten should they want to biopsy her.

This is why I am hoping they will relent and let her see my guy so he can review her test results and make a decision how to proceed.

researchmomma Contributor
researchmomma
Posted

Actually, I was the one who suggested she ask for a different doctor in the practice because he is MY doctor and he is the best and not one of the "old guard". I am not so sure he would just back him up as you suggest. He is more enlightened than most.

If she waits to see another doctor in this area, she'll be waiting about 2 months AND remaining on gluten should they want to biopsy her.

This is why I am hoping they will relent and let her see my guy so he can review her test results and make a decision how to proceed.

Aha! That is great and I hope she gets him. I am envious!

Meggielynn13 Rookie
Meggielynn13
Posted
  • Author

I really hope Dr Gusten will take on a new patient cause I'm sick of seeing this doctor. I think his time as a doctor is coming to an end as I knew more about the new test than he did. I really hope they don't make me wait long because I can't deal with this much longer. My bathroom habits are moving into my school schedule and unfortunately getting up in class without explaining my story to my 6 teachers is stressing me out. Hopefully by Monday I'll have a new doctor and be happy!

Meggielynn13 Rookie
Meggielynn13
Posted
  • Author

Thanks zeeclass6!

I had them check my thyroid and it came back normal but I'm not sure what test they did. I'm just really sick of being tired and them continually checking for mono. I've had it once and know that the tiredness im feeling now is way worse than when I had mono. Always being cold even with 2 blankets on and not being able to sleep isn't helping me when I work full time and go to school for 6 classes. I'm gonna look into those books too!

Thanks IH for the support too. That office has some wacky rules. I hope Boyar will let me go from his patient list. It's time we go our separate ways.

IrishHeart Veteran
IrishHeart
Posted

Thanks IH for the support too. That office has some wacky rules. I hope Boyar will let me go from his patient list. It's time we go our separate ways.

Hon, if for some reason Dr. G can't take you because his colleagues are unwilling to do that, there is another good celiac doc. His name is Dr. Peter Purcell. He is in Schenectady, I believe.

Whatever you do, please do NOT go to Upstate Gastro in Troy. They left me unDXed for 12 years. :angry:

Call on me if I can help in any way.

Meggielynn13 Rookie
Meggielynn13
Posted
  • Author

So I have a new symptom... sulphur burps and major stomach cramps that have been waking me up in the middle of the night the past 3 nights. From research it looks like its from your gallbladder, but I don't have one. I also saw it could be from Celiac but I'm not sure since it just started but my other symptoms have been on going for a few years. This now has me stumped because I thought it was the stomach bug but the burps went away as soon as they came on. Anyone else have a problem with this. I'm going to bring this up with my doctor when I see them, hopefully soon!

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