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Got Results - Negative!


jhol

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jhol Enthusiast

hi there

well i eventually got my results -six biopsies taken.no significant inflammation. mucosa with villi of normal size and architecture. no granulomata,no giadia. no evidence of celiac or malignancy. duodenal biopsy; within normal limits.

so ive not got celiac but i have got gastro-oesophageal reflux disease - not sure how i feel really. i was hoping for some answers!. anyway i did remember to ask for copy of results. mentioned abt my palm rash getting worse since reintroducing dairy and if the rash on my face could be caused by my vitamin e face cream( possibly wheat based) and reminded her of the food intolerance,s( that originally brought me to the docs in the first place) to my complete and utter shock she said she would refer me for allergy testing!!!! this put me off my stride and i completely forgot to ask for blood test results and for new tests to be done.although i expect they will be done when i have the allergy tests.

i also asked for the notes from the hospital when i was told i had scleritis- i wasnt told what it was so i never went back. just to check if it was a definite diagnosis or the doc was just surmising it could be that.

so got some meds for the reflux, but i dont really want to go an get them- id rather try to modify my diet - any suggestions anyone?? ta!

also been having probs with my teeth and now i think ive got yet another abcess, so another trip to dentist!!!

the other thing is - if my bloating is not celiac- its prob dairy .so now im faced with eatin it till i get my allergy testing done even though its gonna make my rashes worse. soz if it sounds like im moaning abt not havin celiac - just a bit miffed thats all. any imput welcome thanks...


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shadowicewolf Proficient

My basic guidelines for GERD is as followed: no greasy, no rich, and no spicy. Sodas can be done depending on how tolerent you are.

Endoscopys are falling out as the gold standard. Try the gluten free diet and see if it makes this all go away.

jhol Enthusiast

My basic guidelines for GERD is as followed: no greasy, no rich, and no spicy. Sodas can be done depending on how tolerent you are.

Endoscopys are falling out as the gold standard. Try the gluten free diet and see if it makes this all go away.

hi there, thanks for your reply

iv,d been reading some of your posts coz id noticed you mentioned gerd in a few. odd thing is ,reflux wasnt one of the symptoms i complained abt to my doc as its one of the newest symptoms and id put it down to my age lol. as for sodas- im fine with diet coke , but anything else especially lemonade sets me off. ive noticed in mornin i get it abt an hour after breakfast and thats toast, sunflower margarine(dairy free) and coffee. so im guessing the coffee may have to go... oh yeah and chocolate- thats bad!!!! ( not for breakfast lol- just generally) ha!

nvsmom Community Regular

I used to have stomache aches in the morning after my breakfast; I thought it was the coffee or sugary syrup on my waffles... turns out it was the waffles. I would stop with toast for breakfast if I was you. It could be non-celiac gluten intolerance (NCGI) or they missed the damaged parts in the biopsy.

Like shadowicewolf sugested, I would try the gluten-free diet for at least 3 months before you rule out gluten as a cause.

... My boys tested negative for celiac but 2/3 has seen their health improve after going gluten-free. Don't rule it out yet.

DavinaRN Explorer

I really want to say, lol just to keep from crying. Celiac was ruled out for me also, stayed gluten free anyway because I felt better. Accidentally had some and ended up in ER from anaphylactic shock. So I headed the allergy direction to. On a positive note, you can avoid the the things that bother you and still have accurate skin allergy tests (it's really not as bad you will think). Now I'm at testing for a mast cell disorder (it's means you have allergic reaction to triggers, but are not allergic in the sense that allergy shots help) and have been placed on Zantac 300mg and Allegra 360mg a day. Hang in there, the answer is out there.

jhol Enthusiast

I used to have stomache aches in the morning after my breakfast; I thought it was the coffee or sugary syrup on my waffles... turns out it was the waffles. I would stop with toast for breakfast if I was you. It could be non-celiac gluten intolerance (NCGI) or they missed the damaged parts in the biopsy.

Like shadowicewolf sugested, I would try the gluten-free diet for at least 3 months before you rule out gluten as a cause.

... My boys tested negative for celiac but 2/3 has seen their health improve after going gluten-free. Don't rule it out yet.

hi

i,d actually be glad to give up the toast- im absolutely fed up of it. i only started to eat it coz i was trying to up the wheat for the tests and id given up dairy (kinda) for a while, so that meant no cereal - although i cant think of a wheat free cereal. im a bit flummoxed as what to eat for breakfast as im veggie and not a big lover of eggs or fruit. a major overhaul of my diet is needed i think.!!!! its nice to hear your boys are feelin better on a gluten free diet - good luck. oh organic cornflakes should be ok - i,ll try them..

nvsmom Community Regular

hi

i,d actually be glad to give up the toast- im absolutely fed up of it. i only started to eat it coz i was trying to up the wheat for the tests and id given up dairy (kinda) for a while, so that meant no cereal - although i cant think of a wheat free cereal. im a bit flummoxed as what to eat for breakfast as im veggie and not a big lover of eggs or fruit. a major overhaul of my diet is needed i think.!!!! its nice to hear your boys are feelin better on a gluten free diet - good luck. oh organic cornflakes should be ok - i,ll try them..

Every few days we make gluten-free pancakes. I'm lazy so I start with a mix but change it from there. For instance, the recipe calls for 1/4 oil, 1.5cups mix, 1cup milk. I use 1c mix, 1/2 to 1 cup of golden flax, 1/4 coconut oil, about 1.5 c coconut milk, 1/4 protein powder, bee pollen and cinnamon to taste (sometimes add cocoa). I try to "healthy it up" a bit. This would make left overs so we have frozen pancakes to toast or nuke the next day.

There are a few gluten-free cereals. Chex is a good one. There are other rice or hemp cereals that are in health food stores. Be careful with organic since that doesn't mean gluten-free. Evenstuff like Rice Krispies has wheat as a general rule.

If you like toast, Udi's is our favourite store bought bread; it's good as toast...not so good plain but the bagels are good untoasted.

Good luck to you! :)


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shadowicewolf Proficient

I do gluten free bisquick for pancakes. I normally eat chex though.

Be careful with corn flakes, sometimes depending on the brand, they can use a barley sweetener I believe.

Happyw5 Explorer

My celiac test was also negative. I did have allergy testing done, because I was already allergic to peanuts. I am allergic to wheat on the blood test and skin test. They did do Igg testing on me and I was allergic to alot of things, but the biggest were gliadin, gluten and wheat. I decided to go gluten free completely, it's been two years now and if I am glutened I can tell the next day (strangely it doesn't hit me right away) I was also diagnosed with gerd and IBS about 9 years ago. My heartburn only bothers me if I have bad seasonal allergies now.

I love chex and vans gluten free cereal. Sometimes I have a hershey bar with my cup of coffee in the morning and it is wonderful!!!

Good Luck

Sarah

jhol Enthusiast

thanks for all your replys

ive been food shopping today and decided im going to buy a few things each week until ive got a stock of gluten free foods i can rely on when i try goin gluten free. im gonna concentrate on the gluten free and not think about the dairy for now - sort out breakfast and lunch and then slowly over the next few weeks try a few recipes for tea. im no cook so god knows what they,ll taste like!!!!. think i,ll start with soup. haha!

im british, so im not sure if we get the brands you,ve mentioned, but we have holland and barrett- which is a wholefoods shop, so i,ll have a trip to that an see what i can find- and look in the recipe section on here. bought the organic cornflakes they were in the gluten free section in the supermarket - im guessing they should be ok - but i.ll check and hazelnut milk to try. oh and some fruit smoothies which i thought would be ok for breakfast- no additives at all -just blended fruit . im gonna google american brands and see if anywhere here sells them . not sure wot a hersey bar is but im thinking chocolate lol!

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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