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Newbie Here. Some General Q's What's Better, Gastro Vs. Endo?
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Hello All,

I'm new here... Just signed up this morning. I've been using your comments and advice to help me over the past few months.

Here's my gluten/gluten free history; (26 year old female, btw)

I've been sick for the better part of a year. At first only mildly, and in those sneaky ways. The fatigue, moody, depressed, "I just need to suck it up" kinda way. And the stomach trouble too, but I've been prone to anxiety related stomach aches, etc. all my life. 3.5 months ago, after many trips to the doctor, internet searches and talking to my mom (for someone not employed in the medical field she sure knows a lot about a lot) I slowly pieced things together. I figured gluten intolerance may be the case, my SIL is gluten intolerant and had a lot of the same symptoms and I figured that going gluten-free would be worth a shot. I was getting worse by the day at this point and started to feel the positive effects of being gluten free right away. With a family member who has gone gluten-free already, and a couple of family friends who have Celiac disease I was aware of a lot of things to avoid, but WOW, I had no idea how hard it would be. Each mistake I make seems to make me more sick than the last. Has anyone else experienced this... becoming more sensitive to gluten after trying to go gluten-free?

Here's where I get to the main question: At my most recent visit to the doc she said she is referring my for gastroscopy. With the nature of gluten related or other GI problems I figured endoscopy would be the way to go. Is gastro sometimes the first step before endo because it can be less invasive?

Also, (sorry about the novel length 'question,') how do you all deal with the guilt of missing work? I know that logically it's simple: If you feel crappy and in pain, don't go to work. But then there's the fact that it's my mistake that I didn't read that ONE ingredient for Saturday night's supper. There seems to be a grey area in my head with a constant reel that says, 'I'm not contagious, maybe I should just tough it out, I can work in pain, maybe I'm just being a wimp.' I'm left with go to work and feel like crap, don't go to work, stay in the comfort of my bed while feeling like crap, but feel guilty too. (I really hope this does't sound like a pity party - but I suppose you guys would be the ones who really know how the up and down emotional aspect of all this really feels.)

Last, but definitely not least, I'd just like to say that my boyfriend has been amazing and supportive through helping me figure things out, to making me lemon and sugar water (helps with the cramping) to trying to ease my guilt when I miss work, to handling my moodiness like a champ and not holding it against me. If you're lucky enough to have support like that, don't take it for granted.

Thanks for reading!

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Sometimes the word gastroscopy is used to mean endo (correctly or not). Make sure you have an appointment with the GI before the procedure and make sure you are getting biopsies of the intestine. The GI should be the one to decide what you need. Have you had the blood tests for Celiac? Why not do those first ? Your regular doc can order those. Remember, if you are gluten free, you will not be making the antibodies that show up in the tests and you may have started healing the intestine (making it hard to get a damaged spot on biopsy).

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Thanks for the quick reply, kareng. I confirmed with the doc that she meant start from the top and go down, not the other way around with the scope. Good adice about a consult with the GI. I had blood work before going gluten free ( I had been gluten free for a day and a half before this doc appt, went back on and had blood work a day and a half later,) and it was negative. That didn't surprise me because I've heard blood work often is. I went gluten-free again right after that because I noticed a BIG difference in just a day and a half.

You also answered another one of my questions. Doc wants me to go back on gluten for 2-3 weeks before the scope - good to double check this with the GI I imagine, but sounds like I'm going to have to. Need to figure out if I can go on some sort of medical leave at work I suppose.

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Its possible you don't have Celiac. You could have NCGI (non-Celiac gluten intolerance). It can be every bit as nasty as Celiac but won't show on antibody tests or biopsy. You still might want to have the endo, just to make sure you don't have an ulcer or something else.

Do you have a copy of your blood tests? You might want to post them here so we can see if you even got the right ones. Sometimes these docs haven't even ordered the Celiac panel.

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I figured I was the non-celiac variety, could have mentioned that off the start... Definitely going to have the scope. I don't have my results, the lab sheet just Celiac screening, nothing more specific.

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The doctor who ordered the tests must have the results - they need to be more specific than just 'negative'.

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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
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