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How May Of You


Becky6

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Becky6 Enthusiast

How many of you tested negative on the celiac panel but the diet is helping? Just curious!

Thanks!


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tarnalberry Community Regular
How many of you tested negative on the celiac panel but the diet is helping? Just curious!

Thanks!

My results on the blood tests were very inconclusive (though I had been gluten-free for two weeks), but my results on the diet have been good, and gluten challenges have produced obvious symptoms.

Becky6 Enthusiast

I just got my blood work back today and it was all normal. I have been gluten-free since thursday and my stomach is already feeling better some of the time! My daughter is also responding to the diet as well! I was just surprised about my results due to all of my symptoms and the bit of improvement I am noticing from being gluten-free. I was just curious how many others were in the same boat as me.

aikiducky Apprentice

I had negative bloodwork, but I'd been gluten free for about five weeks by then. But I'm definitively responding to the diet! I react very clearly and consistently with the same symptoms every time I accidentally have something with gluten in it. Otherwise I feel better than ever in my life before.

Pauliina

pixiegirl Enthusiast

My original internist did a single Celiac blood test (I'm not sure what) but I went gluten-free and felt tons better, I changed internists and also paid to get my DNA tested (I have 2 main celiac genes). My current Dr. feels that with the DNA test and how sick I get when I do accidently ingest gluten there is no doubt that I have Celiac. She sees no need for me to eat gluten for months to get a positive blood/endoscopy test.

My GI also mention that the Celiac test my previous doctor did is worthless. I did finally have an endoscopy but for another problem and it was a year after being gluten-free, my GI said there were no signs of Celiac so I'm happy that the diet is working for me. That's all I need.

Susan

Jenn2005 Contributor

My husband had negative bloodwork, positive endoscopy biopsy, 1 Celiac Gene DQ2 and 1 Gluten Sensitive Gene DQ1, positive Fecal Antigliadin IgA.

My husband had negative bloodwork, positive endoscopy biopsy, 1 Celiac Gene DQ2 and 1 Gluten Sensitive Gene DQ1, positive Fecal Antigliadin IgA.

Jennifer

darkangel Rookie

My bloodwork was all "normal," but eliminating gluten and casein has made a huge difference for me.


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kabowman Explorer

No bloodwork for me (my eldest son's blood test was negative) and EDG showed no damage to three sections tested after 3 months of being gluten-free. I have an aunt that tested positive.

Guest nini

My daughter's ped. GI only did one test and it was negative, but the diet has helped her incredibly. Within a few days of her starting the diet her health improved drastically. I know that she has a genetic predisposition to it because I was positively dx with it.

KaitiUSA Enthusiast

I think if you feel better off of gluten then you should definitely stay off of it. That is the ultimate test and whether you have celiac or just have a problem with gluten you still need to be off of it.

mightymorg Rookie

I fit into this category. I had 4 of the 5 blood tests done, was told they were "normal" (they didn't even have the exact values), but I went gluten-free a week before the tests were done. I feel a lot better being gluten-free, though, and just eating plain, easy to digest foods. I don't feel the desire to go back to eating gluten and chancing feeling like hell again!

nikki-uk Enthusiast

Yes my husband had negative bloods(Ttg) but positive biopsy.

He's been gluten-free for just over a year (still recovering) but much better :)

darkangel Rookie

Off topic, but nini, can I just say I love your avatar? :D

Felidae Enthusiast

My blood tests were negative. However, I'm not sure if the full panel was tested. The difference from going gluten-free has been like night and day. I didn't know that I could feel normal (healthy, I guess?) again. My doctor saw me after being gluten-free for five months and she was very happy with the improvements to my health and well being. She didn't think a scope would be beneficial because I would have to eat gluten for three months and be sick again. I also have two family members that have always had food, gi, and anemia type problems their entire lives, so who knows what I have.

jnifred Explorer

Mine were in "normal" range, but I discovered that I've been eating a very low gluten for a long time without knowing it, without even realizing what gluten is. The difference after cutting out that last bit of gluten has been huge, my arthritis has not had any major flareups since, my jaw is better, sleeping better and I'm not even going into the BM issues, butt :D it is all better.

I am going to have the genetic testing done though, my mom and my grandmother both have the same issues and I have 4 kids, one of whom I am concerned about and so I want to know if the gene is there for us...

DonnaD Apprentice
Mine were in "normal" range, but I discovered that I've been eating a very low gluten for a long time without knowing it, without even realizing what gluten is. The difference after cutting out that last bit of gluten has been huge, my arthritis has not had any major flareups since, my jaw is better, sleeping better and I'm not even going into the BM issues, butt :D it is all better.

I am going to have the genetic testing done though, my mom and my grandmother both have the same issues and I have 4 kids, one of whom I am concerned about and so I want to know if the gene is there for us...

My D was positive by biopsy, neg bloods. I have fibro and ibs, joint problems, sleep issues (same as my most of my family) and am so much better on the diet. we also had a low gluten diet 'cos of my IBS. What jaw problems do you have? I grind my teeth have loads of fillings and have one tooth that fractured and abcessed and had to have root cannaled and crowned in gold as it is strong enough for teeth grinders, it is my most expensive jewlery :) I'm waiting for genetic testing. I just found out today that a cousin also has fibro she is from the side of the family that are very overweight.

Rachel--24 Collaborator
Off topic, but nini, can I just say I love your avatar? :D

Lol..my Mom reads these posts and everytime she sees Nini's avatar she makes a comment about not liking it. I say HELLO!!! Beavis and Butthead....have you *never* seen them before??? She has no clue. :rolleyes:

I love the avatar. :D

Rachel--24 Collaborator

I had negative bloodtests (2 weeks gluten-free before tests). I figured it was something else wrong with me so after only trying the diet for those 2 weeks I went back to eating normal and gradually got sicker and sicker. I went on a anti-candida diet and dramatically improved within days so figured I had found out my problem...Candida. I was *mostly* gluten-free but after buying new hair and skin products I went down-hill fast. The one thing all these new items had in common was wheat-germ oil so I got curious about Celiac again. I was having obvious reactions to the lotion on my hands..which was getting onto my food. I went the Enterolab route....came back positive for everything. I just recently had a biopsy after having been gluten-free for 6 months. It was negative.

elisabet Contributor

My son had negative blood test for celiac,and we can see the difference on a Gluten-free Casein-free diet,just like day and night.

StrongerToday Enthusiast

My blood tests and food allergy testing all came back "perfectly fine". Yet now that I've been GFDF since August I have much more energy, am happier to be around (a direct quote from my own mother), have lost 35 pounds and am slowly inching away from taking up permanent residence near bathrooms!! Not every day is great - but I know that some day I will look back on all this as just a memory.

jnifred Explorer
My D was positive by biopsy, neg bloods. I have fibro and ibs, joint problems, sleep issues (same as my most of my family) and am so much better on the diet. we also had a low gluten diet 'cos of my IBS. What jaw problems do you have? I grind my teeth have loads of fillings and have one tooth that fractured and abcessed and had to have root cannaled and crowned in gold as it is strong enough for teeth grinders, it is my most expensive jewlery :) I'm waiting for genetic testing. I just found out today that a cousin also has fibro she is from the side of the family that are very overweight.

Yep, teeth grinding, jaw clenching all the time. Couldn't chew gum, eat bagels or etc. anything "chewy" was out of the question for YEARS for me. I am sooooo much better, still can't do anything too chewy and of course bagels are off the list of availablity for me, but I am able to chew gum and I don't have the pain in my jaw that was there all day every day for I can;t even tell you how many years. I have a nice $200 mouth piece that I was/am supposed to wear at night to keep from grinding down my teeth. I hate that thing and am not wearing it anymore.

I was told not to even get the biopsy since I eat so little gluten anyway and now I am gluten free and there is NO WAY I am eating that again especially in the quantities and for the length of time needed to get accurate tests. I have too much to do and too many people to take care to subject myself to that.

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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