siligurl

Thank you all for your advice. I guess I wasn't clear: I've known for a few weeks that I have Celiac, but I don't understand all the symtoms. I feel better if I don't eat at all as it seems to make all the problems much better. Not being able to go to the bathroom has turned into a nightmare and makes me sick all over. I have so many complaints that I just don't want to talk about any of it and feel like it must be all in my head, or a mistake??? Does this disease ever get better? I have so many things wrong with me now that I feel hopeless and I suppose I just want to know that there is hope. How long does it take to start feeling normal again, or will I? It's scary.

From what I've read, you have to not only stop ingesting gluten (which could be hidden in your medicine) but you also have to give your body time to heal. So, depending on the damage done, it might take you awhile to feel better.

"not being able to go to the bathroom" is a medical problem. What has your dr said? Have you tried softeners or laxatives?

I too have A LOT of issues and I too have been accused of it all being in my head. IT IS NOT. You have physical issues, and physical issues have real, biological causes. It just may be that your doctor isn't up on the right thing to help fix it. Perhaps it's not just Celiacs-- could it be candida toxicity too?

Bless you, Jennifer

Ok, so I took the candida test this morning and failed miserably in so far as my results were definitely not "normal." ANyone familiar with this test? Is it credible? I can't find a main stream website (like Mayoclinc) that mentions it, only holistic. Anyone did this and change their diet accordingly?

My friend, a doctor, thinks that since my bloodwork was inconclusive for celiacs BUT I definitely respond to certain "wheaty" products more so than others, it may be candida.

Anyone else coping with this? If so, how-- did/do your doctors support you? HOw are you treating it? How do you explain it to your friends/family? What have you found to be helpful?

THanks, Jennifer

As one who self diagnosed as gluten intolerance, I also was able to identify that I'm intolerance to yeast. Also to note that I tested positive for a candida spit test, and possibly thyroid issues along with being pre-diabetes. Another thing to point out is vitamin deficiencies ( malnutrition), one I think I may lack a lot is vitamin c.

OOOH!!! Tell me about your candida spit test and what you've done with the info.... I'm taking the spit test tomorrow if i remember to do it before putting anything in my mouth. my friend suggests that i have that instead of celiac's since my tests came back inconclusive, and some "wheaty" stuff affects me while others dont (i.e., nutrigrain bar, no problem, but bagel or wheat bread-- ow!!!)

thanks, Jennifer

I feel kinda lazy/stupid, but I've never done this before. JUst in case it makes to the posts though: I have heart palpitations, insomnia, chronic constipation and I'm not sure whether I'm going crazy or if it's the celiac. I don't have a doctor in this little town and the one I did see made me feel like I was a nut to even say 'celiac', so does anyone have any advice on any of these issues? Thank you.

Just cuz you may have celiacs doesn't mean you're not crazy... LOL!!! just kidding...

Anyway, celiacs could fit all of those descriptions and you can look at this board or celiac.org to find a litany of symptoms. YOU ARE NOT A NUT TO QUESTION WHETHER YOU HAVE CELIACS. If you go to the celiac.org website, you'll see that this is one of the most widely UNDERdiagnosed conditions out there, and those who are knowledgable will tell you its one of the most prevalent. actually, on the Doctor channel on sirius, they mentioned a recent study that explained why-- how we are processing wheat now-- from genetic alterations to the pesticides etc-- is affecting how humans "process" the wheat. WE created celiacs, in other words. Anyway.

Are you anxious? High strung? Depressed? Irritable? If you answered yes to these questions AND they are unrelated to your physical symptoms (in so far as it's not your health that is causing you to be anxious, depressed, or irritable), then maybe you should see a therapist because your symptoms could be psychosomatic (which is not to say it's in your head... it's just that there is a psycho-bio relationship). If you answered no, then there's a physical cause... and your gut knows. YOu can get tested over the internet... Enterolabs I think... HOpefuly one of the regulars will post more. OR, just demand that your doctor run the tests regardless of whether he thinks you're crazy or not-- he works for you, not the other way around.

best, Jennifer

The tests I see that I should have are:

IGA

IgG

EMA

ttg

Am I missing anything? If I have the blood work done, I'd like to know if I have dificiencies. I have been eating gluten free for approximately 6 weeks and I am aware that this could skew the test for Celiac. Should I have testing done? Is it necessary? Will the information be valuable? I'd appreciate any information you have to share. Thanks! Sandra

Hey, I think those are all the tests... but if you've been gluten free for 6 wks, you'll skew the results. you have to be eating gluten for the tests to be accurate... i think they say about 4 slices of bread a day for about 4-6 wks... others here may be more knowledgable, but yes, you have to be ON a gluten diet for tests to work.

best, Jennifer

He didn't have a problem with us trying the Gluten-free Casein-free diet, saying it was a "healthy" diet, but he wasn't supportive either. Four years later, I KNOW we did the right thing removing gluten (for many, many reasons, but that's a long story!)...she tests positive for allergens such as corn and milk...but I still feed the nagging need for "proof" that gluten is a problem.

To you mind sharing the "many reasons"... I don't mean to pry, but it might be the encouragement I need to jump into the gluten free diet which scares me.

Thanks,

Jennifer

BTW, seizures could be caused by magnesium deficiency... I don't have full out seizures, but spasms that my friend-- a doctor-- says is likely magnesium defic. due to my gut problems and soda intake.

YOu can be tested for vitamin deficiency, including magnesium...

best,

Jennifer

I'm new on this board, and have lurked for awhile since I'm still straddling the fence on what to do about me... BUT... I'm a mommy too of a 3 yr old, so I can more than appreciate your frustration, worry, and concern for what to do for your son. Since I have celiac/gluten sensitivity symptoms, I worry about putting my family-- at least at home-- on a gluten free diet for no reason (i.e., my blood work was inconclusive and really only showed IgA deficiency).

With that said, I think his reaction to a gluten free diet is proof enough. Most people on this board have told me that if I need a doctor's diagnosis to feel good, then to go for that, but that otherwise it is perfectly fine to GO WITH YOUR GUT, or in this case, your son's. For myself, I can tell you that I am 35 years old and feel g-dawful, and have for years, and doctors can't find anything wrong EXCEPT that now I have hypothyroidism and early onset of arthritis in my spine. Oh-- and I've lost my gallbladder, something which is relatively unheard of since no one in my family has gallbladder problems.... yet would be perfectly consistent with celiac's. The point is-- it's better to be safe than sorry. If you "know" there's an issue, don't wait for the doctor to confirm it. For what it's worth, I'm a big believer in mommy instincts-- listen to them.

G-d bless you, Jennifer

Y'all have been very helpful on my other posts, and this one is more "technical" in nature I guess... I already know that for whatever reason, I feel better gluten free and that if I'm gluten free for any length of time, eating certain products makes me nauseous...

My questions are this:

1) Blood work showed mild IgA deficiency, normal all else... What is the relationship of that to gluten intolerance/sensitivity? Is there any?

2) Somethings make me nauseous, others dont. Ceral, fine, waffle fine, nutrigrain bars, fine. Wheat bread or yeast rolls, instant nausea. A friend suggested a problem with candida (candida sensitivity? I'm not sure) but that that might explain why certain wheat products affect me and others don't. I should mention that I definitely have autoimmune problems. Have you heard of candida issues and do you agree that could be a factor in my gut problems??

Thanks, Jennifer

(BTW, for those on Facebook, look me up -- Jennifer Henderson)

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I got in my car and began sobbing. There is no reason, at 25 years of age working out regularly and eating healthy I should be SO BROKEN.

Shauna, I feel the same way... I'm 35 and would absolutely bore you to tears with all the crap that's wrong with me, and now it seems I've developed early onset of thoracic disc degeneration and cervical stenosis. And there is an undiagnosed but devastatingly debilitating problem in my right hip and L4/L5 area. I am being forced to practically live on the sofa because of the pain.

I'm so depressed... and wish that I could just find the culprit as to why.

Best, Jennifer

Can you post the ranges for your total IgA? It looks to me like you're IgA deficient... and if that's the case, you could be half-dead and still get a "negative" result on a celiac panel.

If you are IgA deficient, you have a few options:

1) Get a genetic test

2) Have an endoscopy to check for damaged villi

3) Go on the gluten-free diet... no need to have an official diagnosis if you're the kind of person who can live a healthy lifestyle without it (assuming you feel better on the gluten-free diet)

Mother, thanks for answering! The ref range for the IgA began at 80 (80 -153???). I should have also mentioned that I have hypothyroidism and Hashimoto's although why the docs don't want to actually diagnose me with Hashi's I don't even know-- not complaining as my VA disability, when I get out, will be less with that official diagnosis. The AF won't do the genetic test... and having had a liver biopsy, am not so gung ho about the endoscopy. I think I'm going to try gluten free since it'll be "easier" without my family, but am kinda dreading the prospect. Have to admit, though, that certain items (yeast rolls, wheat bread, and plain bagels) totally cause tummy upset (nausea, cramps) so there is something there I suspect.

Thank you!... Is gluten sensitivity the same as celiacs?

Cheers, Jennifer

Long and short of it, I have a lot of the symptoms of Celiac's and a lot of the related health problems that Celiac's could cause. My labs were:

TISSUE TRANSGLUTAMINSE AB IGA < 3

GLIADIN AB IGA < 3

IGA 77

(At the time, I was dieting so might have been getting some gluten products, but might not have)

My labs throughout the past few years also indicate some liver damage w/ possible iron overload disorder, I had my gallbladder removed without any family history of gallbladder disease, I have hypothyroidism that is not being treated properly, vitamin D deficiency, and borderling magnesium deficiency. I feel like I have chronic fatigue syndrome and have early onset of thoracic disc degeneration and cervical stenosis. I am allergic to whole eggs and once i took that seriously and omitted them from my diet, I can immediately tell the difference when they sneak into my diet.

SO. I am leaving my family temporarily due to a military move and can truly stock the house with only "healthy" things for me... My question is whether you suspect Celiac's since my doctor doesn't despite the related disorders that I have/may have. I don't want to be on a gluten free diet as it is so restrictive if there is no need... but I equally would like to be without the constant pain and fatigue I'm dealing with.

Your thoughts????

Jennifer

Hmm... i didn't know that... makes you wonder tho. I haven't had anything "bad" for me all day, but just had a scoop of slim fast shake in a smoothie and instantly have severe, painful gas. So it was like a holy sh** moment of what the hell am I allergic to now... or was there secretly eggs in it... and there's not, but it does say it may contain wheat. It's the only "wheat" i've had all day... related? i don't know... but I know i've been having less and less as I cut out carbs for dieting, so if there is a sensitivity, i'm certainly reducing my tolerance just by dieting.

thoughts?

thank you, since i haven't said it already, for helping and the insight!

best, jennifer

All I can tell you is there's no egg in Nature's Own honey wheat bread Open Original Shared Link and none in bagels unless it was an egg bagel. Was the bagel maybe whole wheat? It sounds like you might benefit from trying the gluten-free diet. You don't have to have celiac disease for it to do you good.

Thanks for replying... egg was the first thing I thought to check too... The bagel was a plain bagel by Sara Lee, white.... so was the hambuger bun. I just can't really see that much of a difference between the items to see. I suppose the bagel might have had egg in it, but I can't find a list of ingredients. The burger bun just doesn't seem that much different from the bread, but it just really fit the typical reaction to a food sensitivity. It's just weird... I've had several items today containing wheat, gluten, soy, and dairy without any problems.

I dislike the idea of putting my family through a gluten-free diet IF there's no need to... but obviously there was something in that bread.

Howdy! I am borderline with celiacs... IgA low, suggestive of celiacs, and variety of health ailments suggest gluten sensitivity. However, allergy test (IgG, I think) showed negative wheat allergy and positive egg allergy.

OK. So I had some (i think) foccacia cheese rolls this week-- no problem. Had a hamburger bun with BBQ yesterday afternoon for lunch-- no problem. For dinner, had a slice of Nature's Own Honeywheat bread and instantaneously became nauseous. I remember that when I used to occasionally eat bagels for breakfast, would almost always become nauseous, but assumed that was IBS since I was diagnosed with that (before I met a friend who's a doctor with gluten sensitivity).

What are your thoughts... Why would the roll and bun not make me sick, but the bread did? Particular ingrediant you think? Do you think this seems to indicate a gluten sensitivity??

Best, Jennifer

If you are active duty military, you may be discharged from the military if they discover that it's Celiac. My boyfriend teaches ROTC, and he had a cadet diagnosed with Celiac and they had to disqualify him permanently. There is no getting around Celiac in the military, not even with a waiver. So think about cutting gluten from your diet, if you can, and seeing if that helps. Eating MRE's will not help if you have celiac disease though, it is loaded with msg. Hope everything works out for you.

Thank you... My friend (a pediatrician) thinks I may have additional food allergies, so I'm trying-- bless it, it's hard!!-- an elimination diet to see what ALL I may be allergic too.

Celiac's to the best of my knowledge doesn't prevent continuing service; many conditions which preclude accessions are not disqualifying if you're already in... although I just checked the reg and don't see it listed as preventing accessions. You would think, though, that it would be disqualifying because I've heard several people who went gluten free who had even a little gluten send them into terrible distress. Something about your body not having any more tolerance for the stuff once you are gluten free.

Thanks, Jennifer

Hiyas! Grrr-- I'm soo frustrated and any help you can offer is needed and appreciated. I have chronic health problems for about 3+ years now, all of which are diverse and have "stumped" my doctors. ALL of them "could" be related to celiac disease, although none of my doctors are savvy enough to go there. A pediatrician friend recommended I be tested for gluten sensitivity and these are my labs:

IGA = 64 (range: 73-358)

IGM = 88 (53-251)

IGG = 1100 (649-1634)

Icteric index = 0

Lipemia index = 24 (0-50)

TTG IGA <3

Gliadin IGA <3

IGA, QN = 77

The question is this: She says based on the labs and what I was eating at the time (fruit and granola bars), that she can't say really one way or another if I have gluten sensitivity/celiac disease and that I need to see a specialist. BUT, I'm active duty military and CAN'T see anyone for this for probably a year due to me moving soon and other issues (apparently, having chronic pain, fatigue, etc makes you a "problem"). What are your thoughts-- do I need to go gluten free and see if there's improvement while I wait for a better time to see an expert... who I suppose may or may not actually help... I guess I'm really asking whether your labs have to scream celiac disease or if they can be subtle...?

Your thoughts??? I am just sooo frustrated with everything. Years of pain, fatigue, chronic health issues have left me depressed and suicidal (not now!!), and I just truly believe there is an underlying culprit. Either that, or I'm one of the unluckiest people alive. (Sample of health history: hypothyroidism, liver damage, gall bladder removed due to complete failure w/o prior history of gall bladder disease, depression, fatigue, chronic illness/infections, "fogginess", mouth ulders, joint pain for YEARS, and am now getting a CT on back due to back problems to include neuropathy, etc)

Thanks for listening, and thanks for answering in advance!

Jennifer