Me And My Family Show Symptoms Of Celiac,vitamin D Deficient As Well..blood Test For Celiac Came Negative. Still Chance Of Celiac?

[Mitch694]

I have been on the run for a diagnosis for the past three years and have reached nowhere as most doctors I have met so far have either said that I have psychosomatic symptoms arising from a depression I once had or irritable bowel syndrome  ( I'm not depressed anymore, I will be again due to the lack of not knowing what's ruining my life).

I have severe migraine headaches which increased progressively over the years and have  chronic rhinitis since a small age ( I am currently 21 yrs old). Over the last three years, my health started deteriorating. In February 2013, I started suffering from depression ( bouts of uncontrollable crying, extremely low and worthless feeling, sensitive to small unreasonable things, lack of focus and generally like i was dropped into a pit and trapped). I have always been a very strong person who is not generally sensitive. But from that particular point things have just changed. Now I believe I'm not depressed anymore, though I have been diagnosed as having an anxiety problem. Since then I have had  other symptoms recurring ( they come and go and there are days I feel slightly better)  including joint pain (everywhere) , dull annoying aching pain on the entire right side of my body that gives me a numb, extremely weak feeling,  muscle spams and tightness (mostly in the thighs), severe brain fog ( I am a very ambitious person and it kills that I cannot concentrate or remember anything that I am studying anymore), migraine headaches ( pain in the right eye during the attack), cycles where I have acid reflux like symptoms, constant vomiting after every meal, alternating constipation and diarrhea. I always have mild stomach ache after eating and then have to use the bathroom. During these cycles, I have gone to doctors who said it was IBS and put me on medication that never worked on me. I have gone up until three weeks where I could not eat anything but drink ORS. I also have cycles of excessive sleeping where I sleep almost 15 hrs a day ( increases or decreases from 15)  and still wake up extremely tired. Throughout the sleep I am constantly dreaming and get very unrefreshed sleep. I also have shortness of breath,nausea,  chronic fatigue and exhaustion and can not do anything mentally or physically stimulating. There have been points where my hands were weak enough that opening bottles became a challenge. Also have a history of incessant hair pulling since I was a child and vitamin D deficiency ( from a blood test done in December 2014). My thyroid tests came back all normal. This summer I started NAET treatment and according to the muscle testing response I have been shown to be "allergic" to almost all food items and also deficient in vitamins and minerals. The treatment so far hasn't helped me and I came across Celiac disease and asked for me to be tested during the period while I was undergoing NAET. I suspected celiac due to the fact that including all these symptoms, I also have tooth discoloration and brown stains on my teeth that I get cleaned every 3-4 months. Dentists do not really know what causes them so far and the last one i spoke to said it may be due to enamel hypoplasia which occurs in gluten intolerant cases. I did a ttg-IgA and total IgA test but came back negative/normal. I have done IgE test in the past and have results that are sky-rocketing high ( as i have chronic rhinitis). But this time my IgE too came back normal as well despite having allergies. Again, this blood was drawn for testing in the middle of my NAET treatment. Should I trust this result? I hope to find some answer or diagnosis to what is going on with me. I cannot function properly and I am extremely exhausted with no energy all day. Life is crumbling at a very important age. If it may be helpful, my family has a history severe joint pain, spondylosis, migraines and couple of symptoms similar to mine. They all just deal with it. My sister who is 14 have been showing weakness on one side, tooth problems and keeps fracturing herself along with very irregular menstrual cycles. I too have noticed that my menstrual period has reduced to less than 3 days from the normal 5 over the past two years, and they are light. Is anyone facing similar health problems or am I a hypochondriac who is not "thinking positively enough" to get better?  Sorry for the extremely long post. 

[kareng]

Were you eating gluten when you had a Celiac blood test?

[Mitch694]

Were you eating gluten when you had a Celiac blood test?

I was, not heavily though. I have not gone on a gluten free diet so far. 

[Amalthea]

I would suggest reading the book "Wheat Belly."  It doesn't really have to be celiac disease for wheat to be a problem, at this point.  But having a name for it isn't really the most helpful thing, anyway.  The most helpful thing is to try various food elimination things to see if something helps your ongoing problems.  There are various references online for attempting food allergen and intollerance elimination diets.  The body is pretty complex.  And reactions can manifest a lot of ways.  If you're convinced it might be wheat, try eliminating wheat and see if you feel better after a couple months.  But understand while you're doing it that a lot of us with food intollerance problems also have issues besides wheat.  So if it helps but not enough, you may also be facing a need to eliminate milk products, corn products, pesticides, or any number of food allergen possibilities.  I have celiac disease, but I also just don't process any of the true grains very well and feel better if I don't eat them.  And I am mildly allergic to tomatoes, as a whole separate kind of reaction.  So it very well may take you a while to find all the issues.  But if you're feeling better with eliminating wheat there is no dietary reason you genuinely have to eat it, as long as you're getting a diverse diet of other foods that will give you the nutrition you need. 

 

I have learned in my life that waiting for medicine to catch up with all the possible manifestations of my problems tends to leave me feelings sick for way too long.  Try thing and see if they work.  It may well be that you're reacting to the substance gluten breaks down into, rather than gluten, for which there is no test that I am personally aware of.  Or it could be something else in your diet.  Or it may be that science will discover a new way to detect celiac disease for the false negative folks that turn up sometimes, eventually.  But in the mean time, there is no reason you can't attempt to experiment with finding greater health.  If you can manage it, keep a food journal while you go through the process.  It may help you figure out on the bad days if there was a pattern to something just before them. 

 

I personally believe in focusing much more on what works than on what doctors believe.  For example, eliminating all my food allergens and sensitivities, eating fermented foods and my edible weeds (based on the book "Eat Your Weeds") has caused me to lose 50 pounds without eating less or working out.  My doctor tells me that never happens.  Well, it did, and nothing appears to be wrong with me that could otherwise explain it.  So there are things medicine may not yet understand all of.  You don't have to wait for them to catch up to experiment, as long as you have a basic understanding of nutrition and pay attention to the need for diverse nutrients as much as possible, within that context.

 

If you're eliminating something, use the internet to look up what that food was nutritionally rich in, and then research other foods that provide that, so that you can make sure you're not leaving yourself without the vitamins and minerals.  But experiment and see if it helps to eliminate things.  It worked best for me personally to look at those foods I ate A LOT of, first.  Because once the biggest problems were out of the way, then the smaller reaction stuff like tomato was easier to track down, once I wasn't reacting daily to the bigger problems, too, and clouding the question.  Good luck. 

[notme]

what is NAET treatment?  your problems sure sound familiar (ugh) - but - if you're planning (or your dr is planning) on doing more tests, do stay on gluten.  my blood test came back negative because my dumb dr told me to try gluten free *before* testing.  is your dr wanting to do an endoscopy?  they'll tell you to continue eating gluten.  i feel ya, kiddo, they were all like:  we don't know what's wrong with you but here's a pill zzzzzzzzzzzzzzzzz...  

 

doctors are just beginning to make the gut/brain connection.  hang in there.  i hope you find some answers :/

[cyclinglady]

Here are all the celiac tests:

Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Guess what? I tested negative to all but the DGP IGA and yet my biopsy showed a Marsh Stage IIIB (moderate to severe damage). Even on follow-up blood tests my TTG is still negative. I would ask for the additional blood tests before you completely rule out a celiac diagnosis.

Welcome to the forum and let us know how it goes!

[Mitch694]

Here are all the celiac tests:

Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Guess what? I tested negative to all but the DGP IGA and yet my biopsy showed a Marsh Stage IIIB (moderate to severe damage). Even on follow-up blood tests my TTG is still negative. I would ask for the additional blood tests before you completely rule out a celiac diagnosis.

Welcome to the forum and let us know how it goes!

Did you get a negative on the Tgg-IgA test because you were IgA deficient? 

I can't ask for additional tests anymore because my doctor is convinced I don't have a problem with gluten seeing the negative blood test. They all tell me to think positive and believe I will get better. 

So since i have no lead there, I have gone gluten -free now. I am only three days into it..so lets wait and see if it makes a difference! fingers crossed. 

[Mitch694]

what is NAET treatment?  your problems sure sound familiar (ugh) - but - if you're planning (or your dr is planning) on doing more tests, do stay on gluten.  my blood test came back negative because my dumb dr told me to try gluten free *before* testing.  is your dr wanting to do an endoscopy?  they'll tell you to continue eating gluten.  i feel ya, kiddo, they were all like:  we don't know what's wrong with you but here's a pill zzzzzzzzzzzzzzzzz...  

 

doctors are just beginning to make the gut/brain connection.  hang in there.  i hope you find some answers :/

NAET is an alternative form of allergy elimination using Accupuncture/accupressure in the presence of holding the allergen that is causing you problems. It claims to tune the body into believing that the allergen is no longer a problem for you. You can read more about it on: Open Original Shared Link

My doctor says I have a malabsorption problem but he doesn't have an answer to why the problem is there.

[Mitch694]

I would suggest reading the book "Wheat Belly."  It doesn't really have to be celiac disease for wheat to be a problem, at this point.  But having a name for it isn't really the most helpful thing, anyway.  The most helpful thing is to try various food elimination things to see if something helps your ongoing problems.  There are various references online for attempting food allergen and intollerance elimination diets.  The body is pretty complex.  And reactions can manifest a lot of ways.  If you're convinced it might be wheat, try eliminating wheat and see if you feel better after a couple months.  But understand while you're doing it that a lot of us with food intollerance problems also have issues besides wheat.  So if it helps but not enough, you may also be facing a need to eliminate milk products, corn products, pesticides, or any number of food allergen possibilities.  I have celiac disease, but I also just don't process any of the true grains very well and feel better if I don't eat them.  And I am mildly allergic to tomatoes, as a whole separate kind of reaction.  So it very well may take you a while to find all the issues.  But if you're feeling better with eliminating wheat there is no dietary reason you genuinely have to eat it, as long as you're getting a diverse diet of other foods that will give you the nutrition you need. 

 

I have learned in my life that waiting for medicine to catch up with all the possible manifestations of my problems tends to leave me feelings sick for way too long.  Try thing and see if they work.  It may well be that you're reacting to the substance gluten breaks down into, rather than gluten, for which there is no test that I am personally aware of.  Or it could be something else in your diet.  Or it may be that science will discover a new way to detect celiac disease for the false negative folks that turn up sometimes, eventually.  But in the mean time, there is no reason you can't attempt to experiment with finding greater health.  If you can manage it, keep a food journal while you go through the process.  It may help you figure out on the bad days if there was a pattern to something just before them. 

 

I personally believe in focusing much more on what works than on what doctors believe.  For example, eliminating all my food allergens and sensitivities, eating fermented foods and my edible weeds (based on the book "Eat Your Weeds") has caused me to lose 50 pounds without eating less or working out.  My doctor tells me that never happens.  Well, it did, and nothing appears to be wrong with me that could otherwise explain it.  So there are things medicine may not yet understand all of.  You don't have to wait for them to catch up to experiment, as long as you have a basic understanding of nutrition and pay attention to the need for diverse nutrients as much as possible, within that context.

 

If you're eliminating something, use the internet to look up what that food was nutritionally rich in, and then research other foods that provide that, so that you can make sure you're not leaving yourself without the vitamins and minerals.  But experiment and see if it helps to eliminate things.  It worked best for me personally to look at those foods I ate A LOT of, first.  Because once the biggest problems were out of the way, then the smaller reaction stuff like tomato was easier to track down, once I wasn't reacting daily to the bigger problems, too, and clouding the question.  Good luck. 

Thanks a lot for your response! I am going gluten-free.and will pay closer attention to how my symptoms behave under various food eliminations. If i may ask, what were the discomforts/symptoms you faced, and how long did it take for it to all subside once figured out what the problem was?

[cyclinglady]

Did you get a negative on the Tgg-IgA test because you were IgA deficient? 

I can't ask for additional tests anymore because my doctor is convinced I don't have a problem with gluten seeing the negative blood test. They all tell me to think positive and believe I will get better. 

So since i have no lead there, I have gone gluten -free now. I am only three days into it..so lets wait and see if it makes a difference! fingers crossed.

No. I am NOT IGA deficient! I was retested this month because I was accidentally glutened. Different doctor and perhaps a different lab. Again, everything was negative except for the DGP IGA test. As a result, I have asked my family members to get retested and to ask specifically for the DGP tests. My doctors (GI and GP) agree! The TTG tests do not catch everyone! Most of my research regarding a negative TTg (and no IGA deficency) recommends further celiac testing if symptoms warrant it. Perhaps find this research and present it to your doctor. It might help. But you have to be consuming gluten for any of the celiac disease tests to work.

[Amalthea]

Thanks a lot for your response! I am going gluten-free.and will pay closer attention to how my symptoms behave under various food eliminations. If i may ask, what were the discomforts/symptoms you faced, and how long did it take for it to all subside once figured out what the problem was?

 

Well, as for a lot of us here, it isn't simple to say exactly what was causing exactly what for certain.  Here is what I can tell you.  My first chronic symptoms were migraines,  dermatitis herpeteformis and the fact that I got sick easily and often.  From there I went through a whole series of other diagnoses and problems.  I was diagnosed with ADHD, sleep apnea, depression, had constant sinus infections, all manner of digestive issues that varied by day from vomiting to gas to costipation, loose stool, reflux, pain that was suspected of being ulcers, but wasn't.  I lost a gall bladder in the process of trying to figure out all of what was going on.  I was exhausted, in pain all the time, getting massage just to function at all.  I was pretty cranky.  I was diagnosed with IBS and fibromyalgia (for pain and brain fog issues).  And that was sort of the thing over which I hit the emotional wall and took charge of the mess, rather than waiting for doctors to figure it out for me passively.  Eventually various scopes and tests later, it wasn't anything obvious otherwise, and I stumbled on Celiac disease.  Eventually we managed to put that diagnosis together officially, but in the mean time I was working through various hunches and eliminating various toxins in my life, etc.  We also found the usual vitamin shortages like very low vitamin D.

 

Over the course of the next almost 20 years I kept refining toward greater improvments, more success at eliminating problems, figuring out smaller problems like the tomato allergy, etc.  But upon trying to go gluten free, it was only a few weeks before the gi issues started to get less extreme, so that was a big indicator that something was up.  I stopped vomiting for no reason that anyone could determine after eating (I hadn't always had that, but it turned up as a symptom around the same time my gall bladder was failing, which added extra confusion to the whole mess).  It took me probably 5 years to get really good at really not being accidentally glutened due to mistakes, misunderstandings, still trying to eat out, and chaos and trying to share a kitchen with gluten and various things.  But even with all that chaos, I felt so much better and less in pain over that 5 years that I kept at it.  Abstractly I would say it was only probably a reduction by maybe 30%, but at that point, 30% was the difference between dreaming of suicide, and feeling like there might be a path out of the hole. 

 

By about 5 years in I had eliminated enough problems that I could dramatically tell from brain fog and skin rashes and cramping if I had been glutened by any genuinely large amount, and it was dramatic enough that there was absolutely no question that was the problem in my mind, even though my brain wanted to believe, even at that late date, that maybe it was all a mistake and I wouldn't have to deal with all this frustrating disaster of extra work. 

 

Beyond that point, there was more gradual and constant improvement as I learned to make food that wasn't starch based, ate organics and more raw plant material, etc.  But it was a much slower progression.  Then I found fermemted foods and high probiotic foods.  At points in all that I had tried probiotic supplements and enzymes as part of various attempts to clean up my eating habits.  I would say I had some mild but inconsistent success.  Recently it has come to light that many that are labled gluten free aren't acutally gluten free, which may well be a contributing factor.  But probiotic foods like fermented veggies, kombucha, milk kefir grains, yogurt, etc, made a pretty dramatic difference.  I started with kefir and yogurt, but I am also somewhat lactose intollerant, so there was only so much of that I could consume.  It took me a while to branch out from there.  But when I did, I got another one of those wild leaps forward.  About the same time, I started eating my edible weeds as smoothies for breakfast with fresh fruit.  Prior to that I think I was feelings like I had gotten maybe to 65% of normal "feeling good" I remembered.  The probiotic foods and eating my weeds seems like it's gotten me back into the 95% range.  Which considering age advancement and such, it probably better that should have been expected. 

 

The migraines are almost gone, and only triggered now when I am getting ill.  I don't get knocked down sick for days anymore, and not nearly as often.  I just feel a little crummy for a day or two.  I have stopped needing medication for sinus issues, or other infections on any regular basis.  Depression is gone, lethargy is gone, mood instability is gone, hyper acidic stomach is gone, reflux is gone, almost all of the gi stuff is gone, and what remains appears to be related to the loss of my gall bladder.  I don't need pain killers anymore unless I go install tile for several hours, or similar.  I even can install tile instead of laying in bed miserable and achy.  The dermatitis is gone unless I get glutened somehow.  The brain fog has lifted unless I get glutened somehow.  I would say that the only thing that hasn't really budged for me with the complete diet overhaul and removal of toxic chemicals in my life, is the ADHD stuff and the sleep apnea.  And I do still take a multi-vitamin and mineral supplement set.  But at this point, I am losing weight without exercise or calorie counting, I don't feel swollen everywhere anymore generally, and things are pretty good. 

 

It's frustrating not to be able to eat out, and having to take along my own blender, tools, sometimes foods to travel, and pay extra for a room with a kitchenette, but I am living so much more of life now than I was miserable in my bed years ago, that it's hard to complain too much about the hassles.