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Dr. Appt Tomorrow!

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Miss impatient me, moves my doctor's appointment up from 9/3 to tomorrow. This is the follow up to all the tests I've had and I'm so loaded with questions, I'm going to have to write them down. I haven't spoken with the doctor about the positive antibodies yet, so I'm just curious what he recommends.. if he even mentions going gluten-free. I'm planning to anyway irregardless what he says... just trying to rule out some things first... like Crohn's... oh, I hope I don't have that.

With the tTg negative, I don't see a point in a biopsy.... am I mistaken?

In the meantime, I joined the Gluten Intolerance Group here in Richmond. :D

Gretchen

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Don't sweat the diagnosis. Any Gastroenterologist worth his/her salt will tell you Crohn's and Colitis diagnosis are very difficult. Even when a diagnosis is positive, it's not always concrete. My situation went that way. From a Crohns diagnosis, (maybe) to Colitis, to complete limbo. The only thing that has seemed to help is a gluten free diet.

Bottom line is, there is a way to deal with just about anything. Reading medical journals on the effect of Crohn's will scare the bejesus out of you, but it's not always so bad.

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Thank you, Paul. I'll ask the doc to run for the gene and other food intolerances, just so I know. I really do think it's important to go through the "rule-out" stage, as there can be so many other disorders that can have similar symptoms to celiac.

... who's to say that the inflamation in UC & Crohn''s isn't due to gluten, anyway?? It's an obvious display of irritation, you know? I have heard that many who have IBD benefit from going gluten-free.

In any case, thank you again Paul. I'm glad to see you're on the board and that you're another who's better w/out gluten!

Gretchen

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Back from the appointment! He read me all of my test results, which I had never had a doctor do before.... so that pretty neat. He told me I have Gilbert's syndrome (from the high ind bilirubin) and then regarding the celiac, since the most specific test is the tTg and that is negative that I probably don't have celiac. I asked him if he knew what the tTg indicated, and he didn't know... so I kinda explained it. Being that I'm not full-blown, I told him that the neg result wasn't a surprise. He said I could always try the gluten-free diet for a few weeks and gave me some info. He said that I probably have IBS and that he could treat that for a couple of weeks, to see if I feel better... um, I told him I thought that IBS was a ridiculous diagnosis and he admitted that doctors group the "I don't know's" there. I know what's wrong, I'm having an autoimmune reaction to gluten, so I don't consider IBS my diagnosis (anymore). I told him I'll go gluten-free strickly for the fact that I'm intolerant and didn't want to be treated with medicines that treat symptoms and not the cause. He said good luck with the diet, come back if you'd like or ever need. Then sent me on my merry way. At least he gave me the info and said I could always try the gluten-free diet! He was a nice guy, he just didn't know as much as we do :P

The Gluten Intolerance Group recommend a doctor at one of our leading hospitals.. he's a GI spec, head of nutrition at the hospital and apparently his wife has celiac. I didn't realize (until know) how much important having a doctor who knows about celiac is. I think I'll make an appointment just to talk with him.

Oh.. just found out that my pastor's wife is gluten intolerant and she's gluten-free. That was a pretty neat discussion last night during our pre-marital counseling!

Gretchen

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Guest barbara3675

Just got a negative test result yesterday, but had decided to go gluten-free starting the day after the test. I really am feeling better generally, but still have tenderness in the tummy with constipation. How long do you think it will take for that to go away? My granddaughter has celiac disease so I have been cooking for her/eating out with her for five years. She is amazing (6 years old). She was SO SICK when she got diagnosed, a clear case of celiac disease. I actually hoped that I was gluten intolerant because it would explain all of my discomfort, now I have to keep wondering and poking around to find out. My doctor sure isn't being much help, I don't think he understands this. I also have fibromyalgia and have read various places that there can be a link with gluten intolerance there. He REALLY didn't want to hear that. I think he thinks I am a hypocondriac, I don't think so, I think I just read a lot and am trying to figure out why I hurt so much. Barbara from Northern Wisconsin

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Barbara,

What were your test results? Did you get the entire celiac profile or just one test? If just one, which one?

Gretchen

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If you are just gluten intorlerant and not Celiac, it could take quite a while for the diet to work. I've found in my case, the diet helps a lot right away, but it takes some time for symptoms to completely go away (or so the theory goes). I actually have never gotten completely better, but have never been Gluten Free for more than a month. I'm hoping that after 6 months or more of being Gluten Free, that I will have no symptoms anymore.

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Guest barbara3675

Thanks for caring, Gretchen.......I have no idea what test was performed. It was a blood test and only one. They took two tubes of blood, but one was a sed-rate/something to do with the fibromyalgia, which by the way, I didn't even ask for. What do you think I should do now? I had decided to continue eating gluten free and after reading some posts on today's message boards about symptomes of other people/going to continue for sure. My DDIL, who is the mother of my little granddaughter who has celiac, was the one who insisted on this test for me and my mother who has lots of gastro problems. Barbara

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Barbara,

Perhaps this will help (see link below)... it's general information about the tests that a doctor runs with a celiac profile. It usually consist of about 5 tests. See if you can call your doctor and find out what test was negative. Even if you're not celiac, does not mean you're not gluten intolerant... of which needs the same treatment. My antigliadin is the only indication for me so far.

But, I must say.. despite what the medical field says about your tests... I truly think we know our bodies best.

Gretchen

http://www.labtestsonline.org/understandin...sease/test.html

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Gretchen: I just read your post describing your doctor visit. GOOD FOR YOU for not letting that doctor label you with IBS and try to treat those 'IBS' symptoms with another drug with possibly terrible side effects!!!! :D I'm impressed that you got him to admit the 'IBS' diagnosis was really just a catch all category for all the 'I don't know's. Someone on this board called IBS an abbreviation for "I Be Stumped". :lol: Thanks also for posting all that info about what all the celiac tests mean. I did Enterolab tests which use stool samples, rather than blood, but I appreciate the explanation of blood and biopsy tests. Thanks. :)

BURDEE

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That's great that he is supportive of you starting the gluten-free diet even without the blood results showing it.

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It is a shame that we have to educate our doctors, but I can understand that they're busy and treatment is more their speciality than prevention. Like I want an antidepressant for IBS!! I'm tired as it is!! I also read an article in the New York Post (that was in his office) about them using worms (in the intestines) as treatment for IBS. Apparently patients with this treatment improve significantly. Ohhh.. that's not for me!... I'd probably pass out from the thought of it. The worms probably like to eat gluten, that's why the IBS symptoms subside! Ummm... I think a diet is a better and more healthy option! Hahaha!

Gretchen

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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