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Testing Other Allergies Pre Gluten Free?


tarni

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tarni Rookie

My recent blood tests said possibly for celiac, but endoscopy results yesterday said no. So, with information gathered from this forum I had decided I would immediately go 100% gluten and dairy and soy free (just eat fruit vegies potatos fish and herbal tea). I know it will be difficult, but hey I want to get out of this non-life. I was thinking of gradually re-introducing cheese and soy milk, and see how I go. However, I'm just wondering whether to just keep on my normal diet for a while so I can have other allergy/intolerance tests to see what is really a problem and what is not. And I've seen nuts, eggs, legumes, potatos also seem to present problems with others on this forum. I have found (online) that a doctor at my local practice specialises in nutrition, so I'm thinking make an appointment, get the allergy tests done and then go gluten and dairy free (I think dairy/soy is in there, as my sinuses are pretty swollen and wrecked.)

Do you think, it is worth coping with a week or two more on a normal diet in order to get a comprehensive diagnosis in order to move forward with all the information possible? And what to these tests involve? Ta


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sahm-i-am Apprentice

I don't know what possible Celiac means, you either are or you aren't, but having a negative biopsy means you might be gluten intolerant/sensitive. Even still, you might test negative on bloodwork as well and STILL be intolerant/sensitive, as is the case in my daughter. She feels better eating gluten free, so she eats gluten free.

I believe they can test for other intolerances/allergies regardless of your gluten status. I am doing some testing now for dairy, fructose and Small Intestine Bacterial Overgrowth and all these tests have their own diet restrictions for that test. Your doctor should be able to let you know what you can eat before testing. Now, if you want to retest for Celiac, you have to be consuming gluten for a month or more to make it a good test.

Hope you find the answers you seek soon!

ravenwoodglass Mentor

If your blood tests were postive you are one of us despite the negative scope. You have 22 ft of small intestine and the biopsies can miss the damaged spots.

I would go ahead and get off the gluten since you are done with celiac testing. Dropping the gluten will not effect the results of any testing for other intolerances. Also do not assume you have other intolerances or allergies. Not all of us do. While you should drop dairy since the damage done by celiac can prevent us from digesting it until we heal I wouldn't drop other foods until you have been gluten free for a while. Also the gluten reaction in the body can make you show up allergic to a lot of stuff that you might not be allergic to once your body heals. This happened with me prediagnosis because, as my allergist said, my immune system was in hyperdrive so I was reacting to a lot of stuff. Once we got gluten out of my system the other allergies for the most part resolved.

tarni Rookie

Thanks to both of you. Yes, although my blood tests were positive (right genes etc), my doc was very clear to me that the endoscopy would be the real decider. Thus I believed his 'possible' diagnosis. However, in my research (inc and esp this forum) I have learnt a lot, including that yes I am in the same club! :) I went gluten and dairy free 48 hours ago (was planning to see a dietian, but, fed-up with the med system, decided I would just listen to my body and head! :) ). So, day-1 fell (crashingly) asleep in the afternoon, woke up fuzzy, but made it to a short walk to the post-box. Fell asleep again and woke with massive headache, but drank some Red Bull, as suggested by a member of this forum, and it worked a treat! Day-2 (inc ginger tea for breakfast, another suggestion from here) I feel much better and my sinuses are clearing. Should I start taking B12 and magnesium, or wait for a bit? Any advice welcome. Ta, tarni

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    • trents
      Well, the only thing I would conclude with would be, if you choose not to trial the gluten free diet, is to encourage you to get periodically tested, either antibody blood tests or the biopsy or both. I think it something that needs to be monitored.
    • Sking
      So the strange thing is I don't have any symptoms at all, except the soft stools (comes and goes) which they told me was from the Lymphocytic colitis. I had some mild positives on my antibody test and one gene was positive which is what made my doctor go ahead with the endoscopy. The reason they started any of this was finding the lymphocytic colitis this past summer after I had C Diff and she said, Well....it may be from something like Celiac.... Definitely a lot to learn through all of this and I appreciate people like you taking the time to help out a stranger like me!
    • trents
      Well, I wouldn't rule either out. And you might consider trialing a gluten free diet for a few months to see if symptoms improve. That would tell you a lot. By the way, the incidence of other bowel diseases is higher in the celiac population than it is in the general population. And even if you don't have celiac disease, you could have NCGS. Gluten is just problematic for a lot of folks for various reasons.
    • Sking
      Thanks for taking a look. I also just did some research and saw that increased numbers of intraepithelial lymphocytes and villous distortion can possibly be from lymphocytic colitis (which I was diagnosed with this past summer)....so fingers crossed this is what she will say it is.  
    • trents
      IMO, Part 3 has some abnormalties that could indicate the early stages of celiac disease but the doctor is tentatively thinking not, at least at this point.
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