• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lab Results Negative. Everything Else Says Positive. Celiac?
0

17 posts in this topic

I really need some insight, help, & advice... Warning this is long ;(

So I've suffered from depression in the past & severe fatigue for as long as I can remember. I never took medication for depression. I never used drugs or smoked ever, rarely drink alcohol. I absolutely LOVE sleep. It is my best friend. I am a 23 year old femal at 5'2 and typically 105 lbs. I've always been healthy overall.

The past 7 years I've been more active. I would jog/ run for the most part about 3 times a week.

In 2009 I was having severe chest pains while eating at a birthday party and I thought I was having a heart attack. I was rushed to the hospital and it turned out that I had an esophageal tear from acid reflux and was admitted to the hospital. I was waiting to eventually have surgery but luckily the doctors suggested to allow it to heal on its own under their watch to avoid surgery. I was dx with gerd and was questioned if I was bulimic!!! I was angry and offended but admitted to the fact that I get heartburn pain often and would sometimes vomit because of it. But I am naturally thin and had no reason or desire to that even being the last thing on my mind. I then just watched what I ate and stopped the Prilosec prescribed after a months use.

About 4 years ago I adopted the whole "fitness hype" when bodybuilding was becoming more mainstream popular. I ate more whole foods with exceptions of those "cheat meals." I had an iud (sorry tmi) placed a year after.

Towards my year anniversary of iud placement my symptoms of fatigue worsened and my acne, mood, depression increased. I consulted with my primary care physician about my concerns and was finally put on lexapro. I gave it 6 months and decided it was not for me. During that visit she ordered a comprehensive panel, CBC, c reactive, tsh, for blood work. Everything was fine ruling out anemia or thyroid issues that could cause my problems but I had borderline low mcv, mean platelet volume, mean corpulusculur hgb, and extremely vitamin d deficient. I was instructed to take a high dosage of vitamin d after that...

I then researched iud complications and that it might have been contributing to my condition. Had it removed and went completely hormone free. I decided throughout that year of suffering that I would "better myself" even more. I smiled more often and joined yoga classes, scheduled a more balanced exercise regimen of 3-5x a week, and ate more "healthy" foods (ie: every grain, whole, wheat, pastas, etc.). But I found I just wasn't getting any better.

The past six months I started to journal my food intake through my myfitnesspal for vitamin/macro nutrient purposes and noted my mood/reactions/feelings throughout my eating habits and activities. I consumed more whole foods and added vitamins and excluded any supplements containing fillers, artificial sweeteners... I didn't notice much of a difference. And once again increased my intake of "healthy" alternatives of wheat products.

I still couldn't get a hand on why I was getting worst even though I was getting "better." I searched everything and one day I ordered a jimmy johns sandwich. (I love them!) Had nothing but turkey, lettuce, sprouts, tomatoes, no cheese, no mayo, served on their wheat bread. I ate half and immediately had a distended belly. I had severe stomach pains, nausea, bubbly gas, burping, indigestion, and vomited shortly after. My co worker was there during this episode and joked with me that my tiny body looked like I was 8 months pregnant and asked if I was ok. I had a headache, felt exhausted, and took a nap when I got home. Thankfully that was a Friday and I slept nearly all day the next.

I got to thinking about how my co worker reacted and how all of my coworkers always joked about how gassy and bloated I always was. I'm a jokester so I was always open about talking about my constant diarrhea issues and burping outloud. I just never took it seriously or brought it to my physicians attention because I figured they were normal symptoms because thats what happens when you eat?

I was so discouraged at that point which led me to googling every single symptom I had. I started coming across symptoms of food allergies because of the gi reactions I would have after meals. I looked back at my notes and realized that it matched like a puzzle piece to celiac/gluten allergy symptoms. I had always overlooked this but I have always been bloated, gassy, having diarrhea, mood swings, horrible memory, fatigue, aches, etc the list goes on! What stood out so strongly was the fact that after certain meals was when I would have the episode the strongest. I did my own experiment of excluding gluten completely. I immediately felt better. My acne was a huge indication because my cystic acne stopped and the little breakouts I would have would clear overnight. I had energy, I stopped taking naps at work, I lost 10 lbs(I was 120), tummy was flattest its ever been, and the bloating subsided significantly. But I was still slightly fatigued through it all and decided to make an appointment.

Last week my primary care wasn't available so I saw someone new. I brought up valid concerns that linked to celiacs and he brushed it off and said that there's no way a healthy 23 year old like me would have these problems. He started going over my medical history then went into a spiel about reassuring me I don't have cancer. It was such a waste of time and irritating because I felt that he had a preconceived idea of me that I might've suspected cancer given the fact that I work at the cancer center!!! I never even brought up anything to do with cancer! At the end of it all he felt that my depression was a manifestation of my fatigue even though I wasnt necessarily depressed and to trial different meds to see which would work. He ordered a CBC and celiacs panel but they all came out negative.

Keep in mind he spent 10 minutes with me and I brought up my concern that I had been avoiding gluten for 6 months unknowingly through most healthy eating and the past 3 months nearly gluten free and last month 100% gluten free. Also my gluten free vegan protein supplements contain glutamine in addition to glutamine supplement, I have been taking probiotics, and fish oil which I've read sped the healing process if in fact this is celiacs. I pleaded that this would all probably affect results and he said if in fact I had gluten allergies/celiacs that it didn't matter and results would be positive.... I just wanted to scream...

I'm not doing this because of a trend. I never even knew of this until I went crazy for answers. And I definitely wouldn't waste my time/money for a placebo effect. I am tired. I feel like crap and I'm sick and tired of being sick and tired. It's a physically and mentally painful feeling to go through my 20s knowing there is something wrong with me and that no one can figure it out. I'm hitting dead ends and I want to know as someone who has celiac or dealing with a family member, misdiagnosis, etc what you think. My mom btw is very anemic and diabetes runs in my family. My grandmother passed away from breast cancer. I love pasta, breads, I'm your typical carboholic. But I have no problems like this when I eat white or brown rice carbs. Small amounts of wheat makes me very sick. And I wake up sometimes in the middle of the night because my feet and hands tingle like they're dead and I swore ghosts slept on me even when I slept straight on my back. I get random patches of hives. Raised bumps and sometimes blister fluid filled looking, I ignored them and thought they may have been bug bites-they were extremely itchy and go away after a few days...My weight fluctuates quite a bit.. I don't know what else to add besides the fact that its just straight misery dealing with this and I smile through it as much as I can. I just want to make sure I'm doing the right things and not diagnose myself without further evaluation and valid information. I will list my blood work below. Anything helps. I can't wait to hear from you all!!!

St stands for standard range. I apologize f it's sloppy. It's a lot to type lol! I only posted results that had possible significant value and of course the celiac panel. My comprehensive, glucose, and tsh have beautiful numbers so I didn't add them.

Celiac panel---

Immunoglobulin A- 286 St 66-436

Tt IGA- 4 St 0-19

PEPT IGA- 4 St 0-19

CBC---

White count-7.5 st 4-11.1

Red count-4.75 st 4.18-5.64

Hemoglobin-14.3 st 12.1-16.3

Hematocrit-43 st 35.7-46.7

MCV-90 st 80-100

MC HGB-30.1 st 27.5-35.1

MC HGB CONC- 33.2 st 32-36

Platelet-303 st 150-400

MPV-9.1 st 9.6-12.8

Vitamin D-15 st 30-100

Sed rate-3 st 0-20

C reac- <.5 st <1.0

A1C-4.7 st 4-6

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Welcome...

 

A bit tired here...others will add more info, but

 

Your Vitamin D is extremely low -- indicative of malabsorption.

 

The celiac tests you list are not complete.

 

assuming the Peptide test you list is DGP IGA.

 

Missing are tTG-IgG, DGP-IgG and EMA-IgA -- I'm tired so perhaps you listed Total Serum IgA...but do double check

0

Share this post


Link to post
Share on other sites

Hi there.  I will pick up from the exhausted Lisa.

 

The immunoglubulin is your total serum IgA.  This is normal, as are the other celiac tests performed.  But this is only to be expected if you had not been eating gluten prior to testing.  It is surprising how many doctors do not know this :huh:   Add in the L-glutamine and probiotics and you are well on your way to healing.  Testing at this point is pretty much a nonstarter unless you want to go back and regluten yourself for 6-8 weeks.

 

Your tingling hands are probably a neurological manifestation of gluten, and the fluid-filled bumps are probably DH, the major skin manifestion of gluten intolerance. 

 

You seem to be someone very much in touch with your own body and how it reacts and from reading your account it seems pretty obvious to me that you are gluten intolerant.  Whether or not you would test positive for celiac if you were to go back to eating gluten I do not know.  Regardless, the treatment for any kind of gluten intolerance is strict avoidance of gluten.  There are those who believe it is almost heretical to go gluten free without being tested, but I did what you did, in total exasperation, and have never looked back at that decision and would never consider poisoning myself again to try to get a formal diagnosis.  You must make your own decision.

 

Your vitamin D is massively low and needs immediate and substantial supplementation of Vitamin D3 before you develop osteoporosis.  I would try to get a prescription from your doctor for 50,000 units every week for at least two months, and 5,000 units a day on top of that.  The way my doctor explained it to me, with your tank so empty, if you take the recommended supplementation it is barely enough to get you to the next gas station to buy another gallon.  What you need is to fill your tank first, and then keep topping it up until you can absorb it from your foods.  With the summer coming on spend some time in the sun too.

 

If you were not checked for other nutrient levels, you should be.  Vitamins A, B, E and K, folate, iron/ferritin, magnesium, copper, zinc.  You could be low in any of these.

 

Welcome to the forum and let us know how else we can be of help. :)

0

Share this post


Link to post
Share on other sites

Yep...exactly what she said!

Welcome :)

0

Share this post


Link to post
Share on other sites

All looks like excellent advice to me.

Lots of us struggle to get diagnosed, but the proof for me is in how much better I am without gluten, as you have found. Sadly, yours is not the only doctor with misinformation.

I had problems with hormones, and was way better off the pill.

The good news is you have worked it out while you are still young, and hopefully will see big improvements. You might need to be patient, sometimes there are a few more bits of jigsaw to get in place.

Stick around, ask questions, rant, whatever. You just found some buddies to help you out. Welcome :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


Vitamin D, just go to the health food store and get the 50,000 unit Vitamin D3.  The kind from the doc is going to be D2, don't want that.  one every 5-7 days and retest in ~ 3 months.

0

Share this post


Link to post
Share on other sites

Welcome...

 

A bit tired here...others will add more info, but

 

Your Vitamin D is extremely low -- indicative of malabsorption.

 

The celiac tests you list are not complete.

 

assuming the Peptide test you list is DGP IGA.

 

Missing are tTG-IgG, DGP-IgG and EMA-IgA -- I'm tired so perhaps you listed Total Serum IgA...but do double check

Thank you much Lisa for your effort! I did post real late so I understand :) the #286 is total iga and I the other two are the only others he ordered :( my doctor put me on only 2,000 iu of vitamin d3 so I'm still taking that...

0

Share this post


Link to post
Share on other sites

Hi there.  I will pick up from the exhausted Lisa.

 

The immunoglubulin is your total serum IgA.  This is normal, as are the other celiac tests performed.  But this is only to be expected if you had not been eating gluten prior to testing.  It is surprising how many doctors do not know this :huh:   Add in the L-glutamine and probiotics and you are well on your way to healing.  Testing at this point is pretty much a nonstarter unless you want to go back and regluten yourself for 6-8 weeks.

 

Your tingling hands are probably a neurological manifestation of gluten, and the fluid-filled bumps are probably DH, the major skin manifestion of gluten intolerance. 

 

You seem to be someone very much in touch with your own body and how it reacts and from reading your account it seems pretty obvious to me that you are gluten intolerant.  Whether or not you would test positive for celiac if you were to go back to eating gluten I do not know.  Regardless, the treatment for any kind of gluten intolerance is strict avoidance of gluten.  There are those who believe it is almost heretical to go gluten free without being tested, but I did what you did, in total exasperation, and have never looked back at that decision and would never consider poisoning myself again to try to get a formal diagnosis.  You must make your own decision.

 

Your vitamin D is massively low and needs immediate and substantial supplementation of Vitamin D3 before you develop osteoporosis.  I would try to get a prescription from your doctor for 50,000 units every week for at least two months, and 5,000 units a day on top of that.  The way my doctor explained it to me, with your tank so empty, if you take the recommended supplementation it is barely enough to get you to the next gas station to buy another gallon.  What you need is to fill your tank first, and then keep topping it up until you can absorb it from your foods.  With the summer coming on spend some time in the sun too.

 

If you were not checked for other nutrient levels, you should be.  Vitamins A, B, E and K, folate, iron/ferritin, magnesium, copper, zinc.  You could be low in any of these.

 

Welcome to the forum and let us know how else we can be of help. :)

Hi neroli! I'm excited to hear from you. So now what I am going to deal with is to either decide to maintain gluten-free or get that formal diagnosis... Everyone including friends don't really understand what I'm going through and not taking it seriously because I have nothing to back my claims of gluten allergy... I even had a friend telling me there's no such thing as gluten intolerance unless its full blown celiacs ;( I may be willing to go through the pain if that's what it takes... I have a follow up appointment next month and was hoping to be referred to a gi specialist. I'm only taking 2,000 iu of vitamin d3 as instructed so far and will bring it up to my pcp next month. Even though I've gone gluten free for a while I still feel tired. I have more energy, no bloating, still a bit of diarrhea, but lost weight and slowly getting over that "not feeling well" feeling. And I am also heat/temperature change sensitive. I would like to stay off but I fear rejection from my peers that its just all in my head. Are those post gluten-free symptoms normal?

0

Share this post


Link to post
Share on other sites

All looks like excellent advice to me.

Lots of us struggle to get diagnosed, but the proof for me is in how much better I am without gluten, as you have found. Sadly, yours is not the only doctor with misinformation.

I had problems with hormones, and was way better off the pill.

The good news is you have worked it out while you are still young, and hopefully will see big improvements. You might need to be patient, sometimes there are a few more bits of jigsaw to get in place.

Stick around, ask questions, rant, whatever. You just found some buddies to help you out. Welcome :)

Yes I definitely feel better without the pill... There's health care vs medicine care and if you can find the root of the problems I am a strong believer that you can heal without synthetic treatment :) I am wanting a proper diagnosis. I know that's a tough thing to ask for considering how its so over looked... I am seeing dramatic improvements but I still don't feel well even though I have more energy. I have a lot of decisions to make :( I'm so excited to have found support here its all a bit clear now, thank you :)

0

Share this post


Link to post
Share on other sites

When you stop eating gluten it is not like turning off the faucet and presto! no more water :)   Well, actually, it is a bit like water,  because while there may be no more gluten, the past effects linger on.  Just as with too much water there is flood damage, with too much gluten in a gluten intolerant there is an aftermath.  The autoantibodies can take a while to leave, but even after they have gone the havoc they have wreaked remains to be cleared up, the healing process.  Depending on the degree of damage and your own body's healing ability (as well as how perfectly you manage your diet) it can take from six months to a couple of years to totally heal.  For some of us even longer. :(   Yes, those post-gluten-free symptoms are perfectly normal.  Lisa is one who is very heat sensitive.  I often imagine her madly tossing off clothes whilst others are sitting shivering :D

 

While it is nice that our friends care about us, it is annoying when they tell us what problems we can and cannot have, what we can and cannot eat, when we know better than they what our bodies need.  I personally don't believe peer pressure should make our decisions for us, but it can be very strong :rolleyes:

 

Of course the GI is going to want to do (if he is worth his salt) a full celiac panel,

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


and then most probably an endoscopy with biopsy.  And for these tests you will need to have been eating a regular gluten diet.  The estimate of the amount of time needed on such a diet varies with the person making the estimate.  But with your strongly gluten free status I would guess 6-8 weeks of at least the equivalent of a couple of slices of bread per day prior to testing.  So the decision about testing needs to be made fairly quickly.  You could still go ahead with the biopsy to rule out any other problems if you wished.

0

Share this post


Link to post
Share on other sites

Trixim,  Hi!

 

I am coming from a super-sensitive viewpoint

 

Feeling for you.  I know the feeling of the struggle to just feel normal and the body's lack of response.  My last 6 years I've spent taking mega doses of supplements, but all the while not knowing about gluten!  I can relate to people around not understanding.  I also try to act normal/content, but oftentimes fail miserably  Did you have brain fog too?  I didn't know it until mine cleared!  I did call it fatigue, though.

 

.  I learned 11 months ago about my problem with gluten.  I still was eating stuff I was intolerant to.  Yet, I do feel better.  Friends and family are starting to come around.  I have been given hope.

 

I hope you will have hope and that you will get well soon  ***

It sounds like my celiac in the above respects,

Diana

0

Share this post


Link to post
Share on other sites

lol....as usual Neroli is very wise and spot on -- including her image of me shedding clothing -- more than once I have had very strange looks as I shed layers down to my sport tank top in cool or even cold weather -- lots of layers is the way I regulate my temperature -- right now I am wearing my all important tank as I never know when I'll need to strip -- then a long sleeve tee, thin lycra type jacket, polertec vest and polartec jacket -- on my walk I will strip to any combo of the above as it is still about 58 outside, but once I start moving my body cannot cool itself -- the easiest way to describe it is I have a broken thermostat -- can't warm up when I get cold and can't cool from exercise or warm environment -- really it has to do with the amount of histamine the body generates.

0

Share this post


Link to post
Share on other sites

I thought as usual that I was just crazy! I live in Denver & I cannot stand the cold but at the same time I am more heat sensitive than anything.  Often times I wake up in the middle of the night sweating then I'd have to shed completely with my air purifier fan blowing straight at me, then by the morning as I get ready for work I start to burn up and even if it's cold outside I'll be in a plain t shirt and get into work almost sweating.  I'm sure the stress that my body feels responds through the sweating, you feel like death... then my blood pressure would drop and I would get really light headed. My body temperature is normally 97.0 or below. Do you have that low of a temp as well? Do you still have to regulate your body temp :P? And I love 40-60 degress outdoors lol anything lower or higher my body freaks out. I could seriously just stroll around naked and have a sheet around if I get a temp drop. It's like i'm going through menopause as what my co workers would say :(

 

lol....as usual Neroli is very wise and spot on -- including her image of me shedding clothing -- more than once I have had very strange looks as I shed layers down to my sport tank top in cool or even cold weather -- lots of layers is the way I regulate my temperature -- right now I am wearing my all important tank as I never know when I'll need to strip -- then a long sleeve tee, thin lycra type jacket, polertec vest and polartec jacket -- on my walk I will strip to any combo of the above as it is still about 58 outside, but once I start moving my body cannot cool itself -- the easiest way to describe it is I have a broken thermostat -- can't warm up when I get cold and can't cool from exercise or warm environment -- really it has to do with the amount of histamine the body generates.

0

Share this post


Link to post
Share on other sites

YES brain fog had been one of my worsening symptoms. I would joke around and say that "my brain is so gassy because I keep having brain farts"... lol along with what I knew deep down was going on with my tummy :(  It's definitely getting better... I had the worst short term memory where I couldn't remember one thing I looked at or if I memorized barely 6 numbers to write down I would write it in a scrambled or almost dyslexic order.  I would stumble on everything, drop everything, walk somewhere I wasn't supposed to. trip on my own shoes. I was horrible at responding to texts and emails. I would think something but not say it and wonder why the person I was mind speaking to wouldn't respond LOL weird things like that... I was always so confused and would be so hard on myself that maybe I'm lazy and careless but my brain to body connection was so bad I was flimsy it was embarassing :blink:  I now have hope to get better and I get excited to jump on the forum everyday. Everyone here is so supportive its such a wonderful community... Thanks Diana I wish the same for you as well :lol:

 

 

Trixim,  Hi!

 

I am coming from a super-sensitive viewpoint

 

Feeling for you.  I know the feeling of the struggle to just feel normal and the body's lack of response.  My last 6 years I've spent taking mega doses of supplements, but all the while not knowing about gluten!  I can relate to people around not understanding.  I also try to act normal/content, but oftentimes fail miserably  Did you have brain fog too?  I didn't know it until mine cleared!  I did call it fatigue, though.

 

.  I learned 11 months ago about my problem with gluten.  I still was eating stuff I was intolerant to.  Yet, I do feel better.  Friends and family are starting to come around.  I have been given hope.

 

I hope you will have hope and that you will get well soon  ***

It sounds like my celiac in the above respects,

Diana

0

Share this post


Link to post
Share on other sites

I've been so disciplined it's becoming habit to steer away from certain products and I use a few handy apps on my iphone to scan items as well :D  I respect your decision to go without diagnosing I feel its pretty evident that these severe reactions could be anything but gluten... I've been contemplating going gluten free without the dx because i'm having a tough time even choosing to eat it.  I naturally just go for an alternative and i'm so in fear of a reaction since they haven't completely subsided that I just won't have it anymore.  It seems once you figure things out its better to keep getting better rather than taking 10 steps back to make wasteful visits to misinformed docs... Still want to get my other vitamins you mentioned checked so I can start supplementing what other deficiencies I may have.  That's a long time for such big amounts of gluten, it makes me nervous thinking about it because I still have plenty of symptoms subsiding.  It's possible to have negative results and have post symptoms but still have antibodies?  

 

When you stop eating gluten it is not like turning off the faucet and presto! no more water :)   Well, actually, it is a bit like water,  because while there may be no more gluten, the past effects linger on.  Just as with too much water there is flood damage, with too much gluten in a gluten intolerant there is an aftermath.  The autoantibodies can take a while to leave, but even after they have gone the havoc they have wreaked remains to be cleared up, the healing process.  Depending on the degree of damage and your own body's healing ability (as well as how perfectly you manage your diet) it can take from six months to a couple of years to totally heal.  For some of us even longer. :(   Yes, those post-gluten-free symptoms are perfectly normal.  Lisa is one who is very heat sensitive.  I often imagine her madly tossing off clothes whilst others are sitting shivering :D

 

While it is nice that our friends care about us, it is annoying when they tell us what problems we can and cannot have, what we can and cannot eat, when we know better than they what our bodies need.  I personally don't believe peer pressure should make our decisions for us, but it can be very strong :rolleyes:

 

Of course the GI is going to want to do (if he is worth his salt) a full celiac panel,

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


and then most probably an endoscopy with biopsy.  And for these tests you will need to have been eating a regular gluten diet.  The estimate of the amount of time needed on such a diet varies with the person making the estimate.  But with your strongly gluten free status I would guess 6-8 weeks of at least the equivalent of a couple of slices of bread per day prior to testing.  So the decision about testing needs to be made fairly quickly.  You could still go ahead with the biopsy to rule out any other problems if you wished.

0

Share this post


Link to post
Share on other sites

.  It's possible to have negative results and have post symptoms but still have antibodies?  

 

There are posters on this board who have returned for a six-month checkup with their doctor and still have positive blood tests for antibodies.  While the numbers have usually markedly declined, they are sometimes accused of not following the diet corrrectly because the antibodies are still active.  Doctors often bully them, tossing the refractory sprue diagnosis at them, but we always tell them, as long as the numbers are continuing to go down not to worry.  Even after a year, in some people whose numbers have been very high, the tests are still in the positive range.  Very few people actually have refractory disease; they just heal slower and sometimes they are the super sensitives to gluten who have to be stricter than the rest of us with the diet.  Some have to eliminate all processed foods altogether because the food  tests for gluten free are not sensitive enough to pick up very low levels (under 5ppm) of gluten.  A member who uses the screen name dillettantesteph is one of these.  These people who still have high antibody levels do still have symptoms.  But if you personally ever had autoimmune antibodies (i.e., celiac and not gluten intolerant) you have shed them already through your dietary elimination of gluten.  Research is still ongoing as to how to test someone who is gluten intolerant but not celiac and therefore does not have these antigliadin antibodies;  i.e., to find a marker which characterizes the condition.   But because of your gluten free status you may not have this marker either by now if there were one.  Just a very long-winded way of saying that healing does not take place immediately :P , whether celiac or not, and that even in the absence of antibodies there is still damage for your body's road crew to work on before you become completely whole again.   I am five years gluten free and still living on the knife edge, hoping my  rheumatoid symptoms stay at bay and that I can ditch my Humira totally (I have used it for only two separate months out of the last 18 or so months, last time in November last year.)  While all my joints have recovered I occasionally get flares of that electrical-type exruciating pain in my fingers and toes, now down to every six months or so or perhaps, we can hope, now gone forever. :rolleyes: My rheumatologist in U.S. does not believe in a dietary connection with RA but is at a loss to understand how I can go without treatment for such long periods.  Certainly it could not be because of my diet :blink:

 

I would be totally supportive of you not further poisoning yourself to satisfy some doctor's craving for certainty, so long as you do not need that certainty for yourself, also.  You must look inside yourself for that answer.

0

Share this post


Link to post
Share on other sites

My results were much the same after 6 months of gluten-free.  Now I know when I eat something I should not by accident, or am weak and think just one bite.  That is why I am here today.  Good luck you will feel better I know.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,810
    • Total Posts
      932,606
  • Member Statistics

    • Total Members
      64,308
    • Most Online
      3,093

    Newest Member
    Mollie Grant
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
    • This is why many of us stick to our own "Trusted Brands" of things we know are safe, and only buy stuff with the offical certification for gluten free. NOTE also in the US they do not HAVE to tell you their facility also processes wheat on the label, just if the actual product contains it in the ingredients. But many will just to avoid legal mumbo jumbo if they somehow have CC issues. Saying the facility also contains/processes wheat is just them covering themselves if people get sick from it.
    • I make my own mini loafs of a simple almond,coconut,apple sauce blend for dense, bland bread gluten free, and have my pastor bless them. I then keep them in the freezer and bring a piece with me for communion.
    • I don't have milk in liquid form any more, so I switched to coconut flavoured milk (rice based) for cereal, really like it. Then I take coffee black which I've also adjusted to. For an occasional treat I'll have a soy latte, tastes a bit nutty but I'm used to it now and it's as much about the visual treat of sitting in a coffee shop with a big milky coffee anyway. The last time I had a real milk latte I got some huge spots a day or so later on my chest and that was the clearest signal that milk and my skin weren't a good mix. What I haven't done is stop eating products that have milk listed as an ingredient. If I do that I lose so many of the nice gluten-free replacements  biscuits ice cream etc. I know I could try and get dairy free, but it's expensive and difficult to find. So maybe I should try doing that and see how I go... It's funny, a few years ago I used to have a 'healthy'  breakfast of porridge, milk, with a big spoon full of wheat bran for fibre which I convinced myself I needed for digestion. I used to feel pleased with myself for having a good start to the day when I subsequently found it was the worst combination of foods I could possibly have devised. I think If I ate that right now I'd explode!
    • I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...
  • Upcoming Events