Emsstacey

We actually sound very similar! I had (and still do have some minor) neuro issues... tingling hands, leg, etc... and lots of joint pain as well as GI issues. My only positive test was the DGP but my hip showed osteopenia (at 30 years old), and my bloodwork also showed extremely low vit. d and positive for Lyme.

I have gone back and forth because I had an EGD a long time ago looking and it was negative, but my GI/Celiac-ish symptoms have worsened and I am now going gluten-free. I have tried to get my doctors to test further but they always discourage it. THey are very uninformed.

Just fyi... someone going through similar testing and symptoms.

I am wondering if anyone has "flare-ups" before getting a diagnosis?

My story is basically that I have had mouth sores my whole life, diarrhea, stomach/gas issues, ITP (low platelettes) and anemia from time to time. Several years ago I ended up with bad headaches and joint pain. At only 30 years old my hip showed beginning osteopenia and despite it being July when we are outside all the time, my vitamin D level was 16. The doc did a complete celiac panel and everything was normal except for one that read: gliadin antibodies, deamidated. It was 30-something. I can't remember exactly. When I asked about Celiac he said it wasn't convincing but I could go if I wanted to.

Prior to that, I had an EGD in 1999 looking for "malabsorption" but the doctor told me in recovery that it all looked good except for some gastritis. I'm wondering now if he even took any biopsies. I have called and am picking up the records as soon as I can get to the town he is in.

So... I had gone several months/almost a year without any mouth sores and was feeling pretty good. Now, my mouth sores are back, I can barely eat without terrible stomach issues and my joints/fatigue/headaches are back. Can I have celiac and have cycles where I feel somewhat better and then cycles where I feel much worse?

I am so frustrated because I have talked to my new family practitioner about being retested and everyone seems to just blow it off because I did not have a full positive panel... just the one. Plus, when it was run the DGP was unheard of. I'm assuming it was the DGP even though it didn't say peptide in it?

I'm just not sure where to go from here. It's so hard to stick to the diet without a diagnosis but i have little faith that I will get a doc interested enough to diagnose me. Anyone have advice for me?

Thank you!

Wow. It sounds like a lot more people with only the positive DGP. I guess that I need to go retest and find a GI. I would be very grateful if you update after your scope!

gfcolorado, are you saying that only your deamidated gliadin was positive and your biopsy was positive, too?

I ask because my only antibody that came back positive was the deamidated gliadin at a 31. I did not get the scope because I had one done about 10 years ago looking for the same thing. I never did get the results, though, just told it was ok. I'm actually going to go pick them up this week to see for myself what they say.

Just curious! Thanks!

I get something similar. It often happens after eating but I never narrowed it down to one thing in particular... pizza is especially bad, though.

I will get a clear bump on the back/top of my mouth, on my palette. It doesn't hurt, I can just feel it sticking out. It is really weird because I get mouth sores and have as long as I can remember but this is totally different. It seems to pop up in response to something specific.

Just for the record, I am still eating gluten but still noticed it when Gluten-Free as well.

Oddly, my daughter has worsened since we made the appointment. She is going to the bathroom an average of 5 times/day and often within 30 minutes of eating. There is also undigested food visible most of the time as well as being loose and floaty.

Does this still sound celiac? I am thinking she is sounding more celiac each passing day. She is also so easily upset and her eyes just look pitiful... dark circles and puffy.

I am going to call Monday morning to see if they can put us on a cancellation list to see her sooner.

Thank you! I am hopeful that they will be up to speed on current research. Our ped wanted us to go to this doctor who is almost 2 hours away instead of a closer GI. She seems to think they are better and worth the drive. I just wish it didn't take so long to get in. She has went to the bathroom every time she has eaten today and complained off and on all day with her belly hurting.

My dd has complained of stomach aches for a couple of years. She never complains for long, tends to forget and continue with whatever she was doing without any issue. I haven't kept a strict food diary but have not been able to attribute it to any particular food. I have tested positive for deamidated gliadin a couple of years ago and have worried that I might be projecting my fears onto her, but her ped finally agreed that she needed to go be evaluated by a GI.

It seems that her symptoms have gotten worse. She had terrible constipation a couple of weeks ago followed by almost a full week of diarrhea. Now, she is complaining of stomach aches several times per day. Just this afternoon, she ate a carrot with dip and within 2 hours... she went to the bathroom with obviously orange, floating poop. It was bizarre to see it go through her so quickly!

She also has dark circles under her eyes very often, is on the thin side, has nosebleeds and mouth sores. To me, she seems very likely to have Celiac disease.

Does this sound like like Celiac to you guys?? What should I expect at her GI appt? I am really not interested in having her scoped although I know that is a real possibility.

Thanks!

OMG! I hope you fired that one fast... good grief! The DGP is the one I can't seem to get them to run. I believe it would be helpful.

Yeah, he is no longer my doc. He also said, "I guess I can refer you to a GI if you really want to," Uh no, at the time I was tired of doctors!!

It's been 2 and a half year and I am just assuming it was the DGP. It said something to the effect of "gliadin, deamidated". It was right at the beginning of it being offered. I wouldn't think the AGA would have ever said deamidated-- right?

I have suffered with canker sores for as long as I can remember. Mine had gotten almost continuous when I had a positive celiac panel. I read in Prevention magazine a tiny article about the benefits of sublingual B12. It stated that in a trial, 99% of people had complete remission of canker sores by taking 1000 mcg of B12 daily and sublingually. I bought some at Wal Mart for about $5 and started using it. I have not had a canker sore since and that was almost 2 years ago.

It has been a miracle for me. I think I must have been deficient and since B12 is a common deficiency for Celiac's... maybe that is why it is associated with canker sores?

Just an idea but it worked for me!

I had a similar result. My dr. said my celiac panel was negative and I expressed that I was surprised. He then added, well... only one came back positive-- the DGP. Not very convincing, overall negative.

Thank you! It seems that I have so many of the symptoms but not so many of the immediate symptoms. It's the delayed symptoms that can be so vague that make it so hard to commit. However, I seem to now be possibly developing Meniere's and it makes me wonder if I keep eating gluten-- am I just going to develop autoimmune disease after autoimmune?

Anyways-- I appreciate the encouragement. Evidently, I need to hear this in order to comply!

I have posted several times over the past few years about my history. I had aches/pains and osteopenia at 30 years old. History of chronic mouth sores and ITP (low platelettes), allergies and diarrhea. My doctor tested my vit. d level and did a celiac panel to try to find out the cause of the osteopenia. I had an 18 for the vitamin d and the only thing flagged on the celiac panel was a high deamidated gliadin. It was above 30. He said it wasn't convincing, blah, blah, blah... I tried the diet and didn't feel a lot different and have since gone back and forth.

My grandmother has a lifelong history of stomach problems and extreme osteoporosis that has not always responded to treatment. I had her ask her doctor about celiac and the doctor said that is probably what has caused all of her problems but she is "too old to put her through that diet". *sigh* I also have a great aunt that is confirmed celiac through Mayo clinic.

I have had similar luck with getting further testing. My doctors all blow me off and I know that the Gastro's around here are no help. I don't really have family support to go off, either. I had a scope done at 20 years old looking for "malabsorption" because of stomach issues, ITP and rapid weight loss. I also started taking sublingual B12 and my mouth sores have stopped-- if I miss it-- they come back. It sounds to me that I am not absorbing it any way other than sublingual.

So.... do I keep pestering my docs or do I just decide that once and for all... I need to be Gluten-Free? I feel that my only symptoms are the occ. diarrhea, alternating with constipation and horrible gas. BUT, I'm afraid it's ruining my body on the inside-- ex. the osteopenia at a young age-- and those things I can't feel a change with the diet but they are still being affected. It is such a difficult lifestyle to maintain without sufficient proof but I am tired of doctors here not being any help.

What would you do?

I have a great-aunt on the other side with confirmed celiac from Mayo. I have ITP and my family has lots of autoimmune: psoriasis, lupus, meniere's, polycythemia--you name it.

I know the answer, I suppose, it is just that a month or so in... I get so tired of the difficulties of eating out and the prep work to always have healthy Gluten-Free meals available. It would help my motivation to have a more concrete answer. I am going to ask for a repeat panel again and hope the dr will order it.

When your gluten intolerance isn't the typical GI issues it can easily get dismissed as something else. However, anytime you have a family member with Celiac or diagnosed gluten intolerance and you, yourself, have some sort of auto-immune issue that cannot be cured through conventional methods (and possibly only tolerated through pharmaceuticals) I'd be looking at the gluten-free diet as a possible cure.

People often think that just because they don't feel wonderfully better within a month of a gluten-free diet, that they are not gluten intolerant, esp. if they feel worse. Lots of us feel worse before we feel better. Reason? We have secondary food allergies, at least initially. For instance, I cannot eat soy, dairy or very much corn. If I do, I feel bad - irritable, indigestion, ill, etc. These things did not affect me before going Gluten Free. But when I eat "cleanly" and don't have cross-contamination issues, or react to secondary allergies, I feel amazing. It can take months to root out all your issues as you begin to heal.

Just my 2c worth

FooGirlsMom

I posted a couple years ago with a high positive deamidated gliadin, osteopenia, chronic mouth sores, fatique, headaches, vit d level of 18 and joint pains. My dr said it was not convincing of celiac. I have talked to my family dr and he basically dismisses it as well. I have trialed the Gluten-Free diet without very noticeable change, but my main symptoms are no longer GI and more migraine/hormonal related.

Fast forward to this year, headaches more frequent and chronic sinusitis. My mouth sores are better after adding sublingual b12. The frustrating part is that I finally talked my grandmother into asking about a celiac panel. She has bad osteoporosis, frequent diarrhea and rheumatoid arthritis as well as some sort of blood disorder where she is not producing enough red blood cells. Her dr agreed that it is very likely celiac that has caused her problems but does not want to test because she thinks she should be able to eat whatever she wants at her age.

sigh. Is it time to stop chasing a diagnosis and go Gluten-Free for good? Any advice?

I have had a lifelong problem with mouth sores. I even get them on my throat and soft palate. Last year, I read an article stating that over 90% of sufferers no longer had mouth sores after taking 1000mcg B12 sublingually. I started taking it and rarely ever have a mouth sore now.

I think mine were/are related to B12 deficiency most likely celiac related. I have had other neuro symptoms that have improved as well.

I'm not a dx celiac but do have elevated DGP and symptoms of gluten-intolerance. I also tested positive for corn via skin prick test. I was advised that there was no reason to cut it out, but I think at some point, I will probably have to.

I'm not sure of a direct link, but I do know that once you have a sensitivity to one food... it is more likely that you have other sensitivities as well.

It's definitely a difficult one to remove. It is so much easier to substitute gluten items with corn tortillas, etc...

You can do some "normal" camp foods that are gluten-free. Look for gluten-free hot dogs, gluten-free chips, hamburgers, marshmallows, baked potatoes (on a grill or in the fire). You can take rice gluten-free bars like soyjoy and gluten-free trailmix. We always do bacon, eggs, etc... for breakfast and that would be good, too. Maybe gluten-free wraps or breads , too?

Have fun!

Did you grind your beans at the store or at home? If you ground them at the store... then you could have had cc using the grinder that is used for multiple types of beans since most flavored coffees have gluten. Maybe?

If not... I notice that every morning after I drink my regular coffee with cream... I have to run to the bathroom and often feel bad for a while. I think I'm going to have to cut out the coffee completely. I'm trying to phase it out instead of cold turkey since I know I'll have one killer headache for a while.

I am in the same boat. I'm tired of doctors. I've had so many just try to rush me out with a handful of samples and I never feel any better. The only way I have ever felt better is exercise, as close to a natural diet as possible and high-quality supplements.

I would love to have a doctor that would be a partner in my health, but I've decided it's like looking for a needle in a haystack and life is too short to blow all of my money on doctors who don't know anything about what will make me feel better.

I have read several threads on here in regards to Lyme disease and how gluten intolerance often can go along with it.

I was diagnosed almost 2 years ago with Lyme via positive western blot and titre. I had multiple tests done at the same time to determine the cause of my hip pain and severe fatigue. My x-ray and follow up Bone density scan showed mild osteopenia, my vit d levels were 18 and my deamidated gliadin was high at 31.something. My doctor disregarded this as "not convincing of celiac, although you can go to a GI if you want". I have been poked and prodded so much in my life (EGD 12 years ago looking for malabsorption, Bone marrow biopsy looking into low platelets, etc....) that I didn't want to go to any more doctors. I was through.

Now, over the past two years I can't help but think I should have went. I went to my family doctor a couple of weeks ago requesting a repeat celiac panel and he seemed really unconcerned. He wanted to see my EGD and bloodwork from the GI I saw years ago and said he would call when he determined what bloodwork needed to be done. Of course, now it has been over 3 weeks and not a word. Doctors here just aren't good at looking for Celiac.

So, my question is... if the positive deamidated gliadin was due to the Lyme disease... could it get better as Lyme gets better? Most of my symptoms from Lyme (after lots of natural/herbal drugs after my 1 month of doxy) are gone, although I do have some flares from time to time when run down.

Does anyone know? I keep going back to being gluten-free because I'm so sick of doctors and I just don't think I can stand one more doc who doesn't know what they are talking about! I wish I could order my own bloodwork and see if it's still elevated! LOL!

Thanks!

You can get potassium from eating Banana's. I would be careful, though... because you don't know if yours is high or low and either can cause problems. Most likely, it is low, but I would just hate to tell you to go eat a bunch of bananas and it be the other way around.

If you aren't already, I would cut out the caffeine and take a good, quality multi vitamin. Also, the bad thing about palpitations is that stress will make it worse. If they continue to worsen or if they start to happen one after the other, then go to the hospital. 6 or more per minute is cause to treat if they are pre-ventricular contractions, but without an EKG-- you won't know the source. Generally, they are benign, but definitely something to look into and make sure they aren't from a heart problem.

I have had symptoms all my life, but the stress of paramedic school caused symptoms to step up a bit. Had an EGD that dx only gastritis and bloodtests that revealed anemia and low platelettes. I don't think I was ever tested for celiac. Fast forward 12 years to age 30 and ended up with Lyme. The combination of Lyme and extended antibiotics left me feeling 100 years old with extreme fatigue and joint pains. Ended up dx with osteopenia and very low vit d. Bloodwork showed high dgp. Have not pursued further testing as the docs here are not very up to date with newer research and I am tired of being a guinea pig.

I think that the fact that she is feeling bad is reason enough to at least try the gluten-free diet. If her body is producing antibodies (which you said she was positive)-- it is recognizing gluten as something foreign. The fact that her biopsy was negative is most likely that they did not biopsy in the places where damage is at or that she has not had this long enough to have serious damage to her villi. Either way, she should feel much better on a gluten-free diet if that is what is making her feel bad.

I would personally commit to several months on a gluten-free diet and reevaluate. Most likely, she will feel so much better that there will be no doubt as to the cause.

Good luck!

I wanted to update with a response I received today from Vikki Petersen, author of The Gluten Effect.

I am not very familiar with her but signed up for her virtual book tour after seeing it advertised on the Pamela's facebook page. My question can be viewed here on her blog: www.glutendoctors.blogspot.com. I asked about what to do next after being positive for deamidated gliadin antibody and having my doctor not find it significant. She said that she found it very concerning and that I should have been told that my positive deamidated gliadin is an early marker for celiac and I should have been advised to remove gluten from my diet.

It is very nice to finally have someone give me a direct answer, although... I'd rather hear that I can eat whatever I want and not worry about it. Deep down, I know this is what is best for me. I think at this point, living in a rural area with limited knowledgeable professionals on celiac and gluten intolerance-- I am going to go ahead and cut out gluten without worrying about a diagnosis. I hope that I don't second guess myself again in the future. If so, I will probably pursue genetic testing.