Question About Testing When Already gluten-free

[kitkatkid]

background in case it's helpful to the vets or any with info: I always had an "irritable bowel" since a teen or as long as I can remember I was quite embarrassed by it too because of the degree of gas and bloating ...always a ton of gas and bloating I was always trying to go off to relieve it privately which really seemed all the time it was very hard as i had bad self esteem and felt quite helpless with such bad stomach problems, and a lot of D all the time but too long ago to remember the frequency. However I was eating disordered from age 12 to 26 in different varying ways. I am a low panic person so to me between my mother having an obviously messed up stomach gas and bloating/pain, my first daughter seeming to follow in our foot steps I chalked my issues up to what runs in the family, and my eating issues for so many years. I would go through such severe periods of restriction of calories and sugar that when i caved once and ate a huge bowl of pasta, my poor body couldn't handle so much food after such a long period of restriction and i had a lower GI bleed for 5 days off and on. Of course the last thing an ED person does is seek help lol.

 

I was incredibly delivered from my ED in later 2006 and I love the freedom and love my natural weight when exercising and eating what i want when i want (5'7" 135-140..no matter how much i exercised my body loves this weight and I call it my natural healthy weight regardless of others etc usually this is a size 4-6 for me) in 2009 when bowel problems, bloating pain were getting to be a bit much and escalating and I was also starting to feel drained and malnourished, a feeling I knew WELL as an ED person. the memory, feeling groggy and hung over next day etc. I made a GI appointment In the meantime my cousin told me that some people can't tolerate wheat (not gluten) she's a healthy eater and advised me to try cutting wheat so i did at that point i was worried only 3 years from recovery I didn't want to find out the hard way if I could be triggered to go back to ED. I was 1-2 months wheat free when i had blood work done. 

 

the GI told me i had some levels of some antibody but not over a threshold to be celiac??? i had no knowledge and no idea if cutting wheat could affect it He said well you're just stuck with IBShe never advised more tests or cutting gluten. In his defense I'm not sure if I told him I had been wheat free..so considering my normal food I'm pretty sure i was consuming fairly low amounts of gluten

 

I went back to eating whatever after his saying it wasn't a problem and it's just gotten progressively worse...as i said in another post the last year has been REALLY bad, and the last 6 months UNBEARABLE..D alternating with constipation every day, bloating to a preggo sized belly, the gas and the pain, so bad I have to breathe through it like labor and I am used to pain from my spinal cord

 

A friend pointed out their other friend had EXACT issues also 32 yrs old, weight loss and everything i did and she found out it was celiac and finally gained weight and felt normal...i never even considered it as i typically blow off sickness. I have so many issues from my spine (neurogenic bladder atrophy and spasticity) that I try not to get hung up on recording symptoms as I want to hold onto an identity that's not all about being sock, i have enough sickness and try to find other parts of life to enjoy .I was told it would take months to get seen and tests done, and i was also told if I go gluten-free for those 2 months the tests will come back negative. So without a second thought i could not bear another 2 months if going gluten-free would help i didn't care i was desperate for relief (oh and I have been 10-15 poundds underweight for 2 years now despite 3000 calories a day) I also irrefutably am malnourished because i know that feeling. I tried probiotics, digestive enzymes, 3000 cals of healthy foods, supplements milkshakes and still i feel like i did on a 400 cal diet years ago. 

 

My question is is there any point in tests??? will they just come out negative at this point since going gluten-free maybe 1.5 months ago? i can't remember lol i am stunned!! i have not been doubled over (which was every day) I haven't had D since, no cramps, no bloating, very little gas copmaratively. I feel slightly clearer brain wise but not perfect I'm hoping the malnourished brain faog improves with more time but being a rookie I have no idea about whats normal time frame for symptoms resolvign

 

I have goofed a couple-few times since gluten-free and WOW the reaction is violent and I only realize it after the fact as I have D all day the next day violent cramps a few hours after eating it, and pain lasts a day the gas bloating and D slowly setlled down and I would wake after gettign dosed, feeling like a train hit me after getting drunk the night before. It's so night and day Gluten vs gluten-free that there is no doubt in my mind lol. after recovering from ED I hate being restricted and never have will power to avoid foods but i think i was so so ill i never want to go near gluten

 

So is it worth seeing a doc? are there tests that would even show anything? by the time I see one it'll have been 4 months gluten-free and I have issues with many docs after going through hell and back again with my DX for my spine I spent 8 months being treated like crap, muscles wasting and twitching and they'd say stupid things like it was my achilles heel (serious) and ADHD amplified into my body (huh?) finally someone did and MRI and thankfully the syrinx was there clear as day but it took almost a year of watching my body waste away from the neck down and unreal pain and muscles cramping and spastic before the atrophy, a year  of begging for help to get taken seriously. I don't want to go through that all over again if I don't need to. So i was curious if it truly matters? if it is enough that the gluten-free trial is irrefutably the first thing in as long as I can remember that has helped the bloating/gas and D, and I gained weight!!! haha I've been trying for years so it was exciting to think I might even get my booty back ;p

 

if anyone has thoughts i'd love to hear I don't even know all of the tests they can do etc. This is all very new to me and I didn't want to read too much on the web while trying gluten-free because i didn't want to taint my observations of the effects, ie see things that weren't there from reading about it. How long does it take to really feel good, sometimes i get worried I still have some groggy head, malnourished feelings after a month and a half but i wondered if maybe it takes more time...on a diff thread about coffee I know many said it takes time for the gut to heal so i was curious how long it normal for what symptoms? 

 

Thanks a lot everyone. Now that I feel safe to let myself read up on it I am swimming in all this learning lol..it's worth it to me because of knowing how sick i can get now I think i have a handle on a lot of things, but some are still a little confusing to me so anything you have is likely helpful

[nvsmom]

I'm sorry that you have been feeling so poorly. Can you see your family doctor faster and have him run the celiac tests? You do not need a specialist to order celiac tests, and this way you can skip the wait.

After being gluten-free for a month and a half, it is possible that you will still have positive tests. As more time goes on, it be ones less likely that you will have accurate tests. Some people's blood goes back to normal in weeks whereas others take months or years. For example, my initial tTG IgA test was >200 with a reference range of 0-20 but after one year gluten-free it was about 34; I also had another positive test that became negative.

The full celiac panel is:

TTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA

AGA IgA and AGA IgG

The first three tests will show if there is villi damage as seen in celiac disease. The fourth test is a control test to make sure you make enough IgA for tests to be valid; 5% of celiacs don't. The last test is thought to show gliadin sensitivity in celiacs and those with non-celiac gluten sensitivity (NCGS).

The endoscopic biopsy requires only two weeks on gluten so it might be an option if you can tolerate a shorter gluten challenge.

This report is good reading on celiac disease. On pages11-12 it discusses the tests. Open Original Shared Link

Best wishes.

[cyclinglady]

It would be great if you could get a definitive answer, but it looks as though you've been gluten free for a long time for tests to be effective.  It also sounds like a gluten challenge would be too much for you.

 

I'm diagnosed, but my gluten free hubby has never been tested.  Just was advised by his PCP and my allergist to stop eating gluten.  After working on it for a year (many cheats), he finally adhered to the diet 100%.  (It helped that one of his symptoms was snoring and I could tell when he cheated.) He is 12 years gluten-free.  

 

For some people, they need the diagnosis to help them adhere to the diet.  My husband knows that he can't cheat or his health suffers.  It's just not worth a gluten challenge.  For me, I didn't have symptoms (just anemia and thyroiditis) and I needed convincing, "Really, both of us can't have gluten?"  Plus, I'd be the first in my family to get a diagnosis and I could help others who are having health issues.

 

Good luck!