Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Negative Test Results, Case History, Thoughts?

Thursdaysangel77

Recommended Posts

Thursdaysangel77 Newbie
Thursdaysangel77
Posted

Hello everyone, (Warning: Extremely Long Post!)
I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test.

Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010.

The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it.

I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day.

My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight.

My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014.
IgA     188     (Normal is 80-340)  So that is normal.
TTG-IgA     <1.2     (Normal is 0.0-3.9)  So that is normal too.

I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions?

There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much!

~ Thursday

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Your symptoms do fit with celiac disease, and possibly with hypothyroidism too (cold, tingling and rashes). While gluten-free, you feel better, are healthy enough to conceive, but when you eat gluten you become unwell, lose weight and have lactose intolerance... With a family history of celiac disease, I would guess celiac disease.

 

And low B12 is not always a symptom of celiac disease. My B12 actually exceeded the normal range when I was first diagnosed.

 

Were you eating gluten for two months prior to testing? It sounds like you were but I though I'd check. As you probably know, going gluten-free will cause celiac tests to show a false negative as time goes by.

 

It's a real shame that the doctors didn't run the other tests on you. Some celiacs are only positive in the IgG version of the tests, others only have positive DGP tests, and a minority have all negative blood tests but a positive endoscopic biopsy.  This is the full celiac panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum Iga

AGA IgA and AGA IgG (older and less reliable tests)

 

Could you get the tTG iGG and the DGP tests done? Have you considered the biopsy? More testing might be a good idea. Genetic testing could help too.

 

If testing is not an option, I would advise you to go back to gluten-free eating. You appear to have celiac disease or non-celiac gluten intolerance (NCGI), either way gluten is making you feel poorly.

 

You might want to get your little guy tested too. If his test is negative, repeat the testing every couple of years. Symptoms aren't always obvious, and with a family history of AI diseases, there is a chance he will get one.

 

Welcome to the board.  :)

Thursdaysangel77 Newbie
Thursdaysangel77
Posted
  • Author

Hello nvsmom,
Thank you for the insight. I really appreciate your reply! I have been eating gluten since roughly August of 2012 and the IgA and TTG-IgA tests were run 3 days ago on January 10th, 2014. I have had my TSH tested a couple times since 2009 because I have been feeling unwell for that long. They always come back within normal ranges and I have heard that's really common. I don't know why Doctors don't test for free t3/t4, etc. Probably the same reason why they think running one or two Celiac tests is effective. I do not have a family history of Celiac Disease but I have a family history of Autoimmune Disorders. My sister also has a Wheat Allergy. Also my sisters, my mother and I have only been getting sicker and sicker for a very long time. The symptoms of Celiac Disease seem to correlate a lot with all the various and random things going on with the four of us, but I am the only one of the four who has been tested for Celiac and of course that came back negative. I have been tested for a lot of things, Lupus, B12 Deficiency, Peripheral Neuropathy, H. Pylori, etc. All negative.

My Dr. is currently running a culture, ova & parasite, another H. Pylori and an occult blood test on me right now. If these come back negative I will request the full Celiac Panel. Thankfully, though not perfect, my doctor is somewhat open minded and at least mildly informed because he told me even before doing the IgA and TTG-IgA tests - that they may come back negative and that doesn't mean that I don't have Celiac Disease necessarily. So at least he is aware of false negatives and he is fairly open to me requesting tests. He told me a biopsy is the best test for Celiac Disease and has been contemplating sending me in for a Colonoscopy, so if he does send me in for a Colonoscopy, I'll request an Endoscopy and Biopsies at the same time. That way I don't have to be put under twice.  

Though I think my Dr. might be getting a little fed up with my "random" and "all over" symptoms... he doesn't know of anything that could cause all of my symptoms. I think the recent development of pins and needles, burning and tingling has really thrown him but I have read all over the place that Celiac Disease can cause that. He sent me in for an EMG but that showed no notable nerve damage. So he keeps talking about sending me to a "Tertiary Care Facility" a few hours from here, somewhere with more specialists and better tests and stuff. I don't know if he will actually do that, as it is... he isn't setting up another follow up with me... : (  Basically he would like to "wait and watch" all my symptoms. He said he'll contact me via phone with my results.

~ Thursday

pricklypear1971 Community Regular
pricklypear1971
Posted

You definitely need a full thyroid panel along with a full celiac panel. Incomplete testing is worse than no testing IMO, since it can leave you with the (perhaps false) impression you are negative.

I think what is must telling is you went into remission while pregnant. THAT is a strong hint there's autoimmune involvement....and your doctor probably knows that... I'dxtry to get complete autoimmune panels out if him: Celiac, thyroid (free t3, free t4, reverse t3, antibodies) and anything else you're curious about. Take those results anywhere you go (get copies).

I hope you get answers soon.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I agree with what others have posted and if it were me I would request the biopsy.  Make sure they take at least 5 or 6 of them.  Not only can this confirm the diagnosis, it can also rule out a few other more serious conditions.

Thursdaysangel77 Newbie
Thursdaysangel77
Posted
  • Author

pricklypear1971 - 
Thank you so much for your reply! It was like a light switch turned on when you said that I "Went Into Remission" - During pregnancy! I had no idea that AI's could cause remission during pregnancy, nor did I even make the connection that I could've been in remission. All I knew was that I felt incredible while I was pregnant, I had an amazing pregnancy and for the first time since I had gotten sick, I was able to gain weight! Eat dairy, eat anything I wanted actually... and not be sick at all. My insomnia was cured, my circadian rhythm immediately fixed itself, my depression vanished, so did my anxiety and panic attacks. I felt healthy and young, like a teenager again. I was upbeat and energetic. Being pregnant made me feel 20 years younger, lol... and that sounds silly since I am only 27 but I've felt more like 40 or 50 years old since 2009. I didn't even go through morning sickness really during my pregnancy, lol, I thought it was really odd that I had more nausea before I was pregnant. You are right, I should have a complete thyroid panel too and more seriously pursue the possibility that I do have an autoimmune disorder. I was thinking of giving up...

I know that all of you wonderful people on this board understand how hard and defeating it is when you're told for years that you're fine. My anxiety was such sudden onset I can tell you the exact month it developed, November of 2009. I seen one Physician's Assistant in 2010 who made me feel so bad...  :( He told me everything was in my head, caused by anxiety and to go on meds and go away. I stopped seeking answers for a long time after that.

But I know he is wrong. It's just hard to keep hearing "Everything is normal." - It's easier to just suffer in silence. pricklypear1971, if I went into remission during pregnancy, could I have immediately went out of remission within a few days of having the baby? I guess I am just wondering if that may have been why I got so sick and suffered so many complications after having my son. To be honest, if it weren't for how terrible things were after having my son, I'd have another... but it really was terrible. I swelled up about 5 times my normal size, I was so swollen and so much heavier than I was just 24 hours earlier, that I could hardly move, walk or lift my legs. I had to literally use my arms to pick up my legs and I could hardly get around or get out of bed or get to the bathroom... it was like a night mare. Otherwise, I'd totally have another but I'd like to figure out what is wrong with me and get it under control and treated first.

NoGlutenCooties - 
Thanks for the input, I'd like to go ahead with the biopsy and EGD since my doctor would like me to have another Colonoscopy. If he orders the Colonoscopy, I'll ask for an EGD and Biopsy too. I will definitely ask them to take at least 5 or 6 samples.  

Last night I was thinking about my sisters third child, he is only 14 and has had a lot of injuries, including two broken wrists (each wrist, not the just same one.) and a bunch of other stuff. Which occurred to me that could be a sign of Celiac as well. I was speaking to my mom last night and we were talking about how all four of us girls suffered from gastrointestinal issues first before any of our other symptoms or AI's or issues set in. I think it would be beneficial to request a more complete set of Celiac blood tests as well. I have seen quite a few board members who only show positive on the DGP-IgG test, so I am definitely going to ask for that and a few others. The abbreviated panel I received was only the Serum IgA and the TTG-IgA and I just don't think that is thorough. I am with so many of the posters on here, I cannot understand why doctors don't order full panels or do complete testing! It's a waste of time and money to do incomplete testing and brush everything off. I too have been told it's just anxiety and IBS and that otherwise I am perfectly healthy, my husband and I really beg to differ, I do not feel or seem healthy. I finally might have a decent doctor who will bare with me on this though.

~ Thursday 

nvsmom Community Regular
nvsmom
Posted

Hello nvsmom,

Thank you for the insight. I really appreciate your reply! I have been eating gluten since roughly August of 2012 and the IgA and TTG-IgA tests were run 3 days ago on January 10th, 2014. I have had my TSH tested a couple times since 2009 because I have been feeling unwell for that long. They always come back within normal ranges and I have heard that's really common. I don't know why Doctors don't test for free t3/t4, etc. Probably the same reason why they think running one or two Celiac tests is effective. I do not have a family history of Celiac Disease but I have a family history of Autoimmune Disorders. My sister also has a Wheat Allergy. Also my sisters, my mother and I have only been getting sicker and sicker for a very long time. The symptoms of Celiac Disease seem to correlate a lot with all the various and random things going on with the four of us, but I am the only one of the four who has been tested for Celiac and of course that came back negative. I have been tested for a lot of things, Lupus, B12 Deficiency, Peripheral Neuropathy, H. Pylori, etc. All negative.

My Dr. is currently running a culture, ova & parasite, another H. Pylori and an occult blood test on me right now. If these come back negative I will request the full Celiac Panel. Thankfully, though not perfect, my doctor is somewhat open minded and at least mildly informed because he told me even before doing the IgA and TTG-IgA tests - that they may come back negative and that doesn't mean that I don't have Celiac Disease necessarily. So at least he is aware of false negatives and he is fairly open to me requesting tests. He told me a biopsy is the best test for Celiac Disease and has been contemplating sending me in for a Colonoscopy, so if he does send me in for a Colonoscopy, I'll request an Endoscopy and Biopsies at the same time. That way I don't have to be put under twice.  

Though I think my Dr. might be getting a little fed up with my "random" and "all over" symptoms... he doesn't know of anything that could cause all of my symptoms. I think the recent development of pins and needles, burning and tingling has really thrown him but I have read all over the place that Celiac Disease can cause that. He sent me in for an EMG but that showed no notable nerve damage. So he keeps talking about sending me to a "Tertiary Care Facility" a few hours from here, somewhere with more specialists and better tests and stuff. I don't know if he will actually do that, as it is... he isn't setting up another follow up with me... : (  Basically he would like to "wait and watch" all my symptoms. He said he'll contact me via phone with my results.

~ Thursday

 

I too thought I had Lupus, but it was lingering celiac disease symptoms and thyroiditis... at least that's what the rheumy says, and I have been better while gluten-free - mostly. Symptoms like joint pain, nerve problems and cognitive issues tend to be some of the slower symptoms to improve, so if you go gluten-free again, don't be surprised if symptoms linger for 6 months to a year. It can take a long time to heal.

 

AI diseases do go in remission. There are definite ups and downs. It varies from week to week, to good years and bad years.  After being gluten-free for over a year, I still have some ups and downs, but they are not nearly as extreme as they once were. KWIM?

 

Best wishes.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


1210donna Newbie
1210donna
Posted

I'm IgA deficient.  My IgA antibody test for celiac was negative. Didn't realise those with IgA deficiency (3-5% of people with celiac are IgA deficient) that a neg on the IgA test is generally a false negative.   I had been gluten-free for 9 years when I had the biopsy, again negative.  Nobody told me this too could have been a false negative as I'd have needed to be on gluten at the time.  Developed progressive peripheral neuropathy since being on gluten 2010-2013, neuro felt celiac was at work.  Significant improvement since returning to gluten-free. 

1210donna Newbie
1210donna
Posted

if one is IgA deficient (and 3-5% of people with celiac are) then the IgA antibody test is not reliable.  Instead they test for Antigliadin antibodies which does not rely on IgA levels.

icha Newbie
icha
Posted

I'm IgA deficient.  My IgA antibody test for celiac was negative. Didn't realise those with IgA deficiency (3-5% of people with celiac are IgA deficient) that a neg on the IgA test is generally a false negative.   I had been gluten-free for 9 years when I had the biopsy, again negative.  Nobody told me this too could have been a false negative as I'd have needed to be on gluten at the time.  Developed progressive peripheral neuropathy since being on gluten 2010-2013, neuro felt celiac was at work.  Significant improvement since returning to gluten-free. 

 

i am glad you said this because i also have an iga deficiency. when they tested me for gluten, they tested iga as well to confirm -- no iga, so negative blood test. i had a follow-up endoscopy but have been low-gluten (oatmeal only) for almost 20 years because pasta, breads, etc. taste like mold. endoscopy negative, gastro basically threw up her hands and said 'if you feel better when you don't eat bread, don't eat bread'

Thursdaysangel77 Newbie
Thursdaysangel77
Posted
  • Author

Update - All of the parasite, H. Pylori and other tests came back negative so my Doctor is sending me to a GI doctor for a colonoscopy, endoscopy and biopsies. Mainly it is to search for Celiac Disease but it is also to look and see if they can find anything else wrong, in case it isn't Celiac, though my Doctor seems to think it could likely be Celiac. The appointment is set up for February 17th, so around three weeks away. That is not the date of the procedures though... I think... I think it's just an initial appointment where I'll meet the GI and talk to him about what is going on, etc. Any advice or info I should know before this appointment?

~ Thursday

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    2. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    3. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
    4. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      @tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...
    5. trents
      - trents replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.