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How May Of You

Becky6

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Becky6 Enthusiast
Becky6
Posted

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
tarnalberry
Posted
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
Becky6
Posted
  • Author

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
aikiducky
Posted

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
pixiegirl
Posted

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
Jenn2005
Posted

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
darkangel
Posted

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

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kabowman Explorer
kabowman
Posted

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
Guest nini
Posted

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
KaitiUSA
Posted

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
mightymorg
Posted

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
nikki-uk
Posted

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
darkangel
Posted

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

Felidae Enthusiast
Felidae
Posted

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
jnifred
Posted

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
DonnaD
Posted
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
Rachel--24
Posted
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
Rachel--24
Posted

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
elisabet
Posted

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
StrongerToday
Posted

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
jnifred
Posted
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
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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