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Question About Vaccinations


gfgypsyqueen

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gfgypsyqueen Enthusiast

Hi,

My 2 yr old is seriously behind on vacinations. She is due to go in next week to start getting her vacinations brought up to date. One of thereasons she is behind is because she hasn't been growing and hasn't been all that healthy. Now she is dairy free and starting to show signs of improvement, but still has issues. We are about to start a gluten challenge with her. She has been tested - inconclusive.

My problem is that she still isn't all that healthy. We can't get the allergic reactions under full control. Had to cancel the allergist appt. So she still gets this itchy rash and her stomach hurts and sounds like a popcorn machine. So she is about to start a gluten challenge. I am wondering if I am just crazy to post pone this vaccine catch up appt again.

(I know vaccines have nothing to do with Celiacs. I just don't like getting vaccinated when not really healthy.)

What do you think?


  1. Don't worry about it and get the child caught up?

  • Or, wait a month and see if the gluten challenge starts making her feel better, then get the vaccines started again?

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kbtoyssni Contributor

I don't know a lot about vaccinations, but I do agree that it's probably not a good idea for someone whose immune system isn't healthy. You might want to inquire about the vaccines that she's not getting and ask about the symptoms of the diseases. You're obviously very aware of your daughter's health so knowing the symptoms will help you bring her to the doc right away if you think she's got anything. From what I can remember, most vaccines are for diseases that aren't that common but can be serious if there's an outbreak.

Guest Doll
Hi,

My 2 yr old is seriously behind on vacinations. She is due to go in next week to start getting her vacinations brought up to date. One of thereasons she is behind is because she hasn't been growing and hasn't been all that healthy. Now she is dairy free and starting to show signs of improvement, but still has issues. We are about to start a gluten challenge with her. She has been tested - inconclusive.

My problem is that she still isn't all that healthy. We can't get the allergic reactions under full control. Had to cancel the allergist appt. So she still gets this itchy rash and her stomach hurts and sounds like a popcorn machine. So she is about to start a gluten challenge. I am wondering if I am just crazy to post pone this vaccine catch up appt again.

(I know vaccines have nothing to do with Celiacs. I just don't like getting vaccinated when not really healthy.)

What do you think?


  1. Don't worry about it and get the child caught up?

  • Or, wait a month and see if the gluten challenge starts making her feel better, then get the vaccines started again?

That is a tough one! *Generally* a doctor won't give a vaccination to a child who is *severely* unwell or is unwell due to a virus, infection, etc. Without actually knowing anything about her actual clinical state, it's hard to say if just being malnourished or "run down" would exclude her from getting vaccinated.

Another issue is her allergies. There are some vaccines that children with specific allergies cannot have, and children who have reacted to a vaccination with an anaphylatic response are usually not vaccinated again after that. The doctor may also suggest that she receives an "inactive" version of any vaccine that is also given as a "live" version. It is possible that the doctor may want to wait until her current allergy outbreak (and over-reactive immune system) have settled down. There is some reason to suggest that certain vaccinations may trigger autoimmunity in those with the genes for it (possibly due to the actual virus and/or the stimulation of the immune system), but that's not conclusive yet.

You will have to discuss this with her doctor. The risk must not outweigh the benefit.

Best of luck and I hope she feels better soon!

P.S. In my opinion, an "inconclusive" biopsy is a positive one. You can't be a "little bit pregnant" (sorry if someone else here has used this line!). If there is *any* damage to the intestines, that is consistant with (perhaps early) Celiac Disease.

Fiddle-Faddle Community Regular

Very tough question, with good thoughts above.

If you do decide to get "caught up," I would UNDER NO CIRCUMSTANCES let them give her more than one vaccine at a time. There are NO long-term studies indicating that multiple vaccines are safe even in perfectly healthy people.

I would choose which vaccine to give her based on the severity of the disease it prevents (I would choose the polio vaccine over the MMR).

And while we don't know if there is a link between celiac and vaccines, Dr. Andrew Wakefield has shown pretty clearly that there is a link between the MMR vaccine and autism--and the autistic kids in his study ALL had leaky guts. So if your daughter is having leaky gut problems (like celiac), I would hold off on all vaccines until that is resolved.

debmom Newbie
Hi,

My 2 yr old is seriously behind on vacinations. She is due to go in next week to start getting her vacinations brought up to date. One of thereasons she is behind is because she hasn't been growing and hasn't been all that healthy. Now she is dairy free and starting to show signs of improvement, but still has issues. We are about to start a gluten challenge with her. She has been tested - inconclusive.

My problem is that she still isn't all that healthy. We can't get the allergic reactions under full control. Had to cancel the allergist appt. So she still gets this itchy rash and her stomach hurts and sounds like a popcorn machine. So she is about to start a gluten challenge. I am wondering if I am just crazy to post pone this vaccine catch up appt again.

(I know vaccines have nothing to do with Celiacs. I just don't like getting vaccinated when not really healthy.)

What do you think?


  1. Don't worry about it and get the child caught up?

  • Or, wait a month and see if the gluten challenge starts making her feel better, then get the vaccines started again?
janelyb Enthusiast
Very tough question, with good thoughts above.

If you do decide to get "caught up," I would UNDER NO CIRCUMSTANCES let them give her more than one vaccine at a time. There are NO long-term studies indicating that multiple vaccines are safe even in perfectly healthy people.

I would choose which vaccine to give her based on the severity of the disease it prevents (I would choose the polio vaccine over the MMR).

And while we don't know if there is a link between celiac and vaccines, Dr. Andrew Wakefield has shown pretty clearly that there is a link between the MMR vaccine and autism--and the autistic kids in his study ALL had leaky guts. So if your daughter is having leaky gut problems (like celiac), I would hold off on all vaccines until that is resolved.

Ditto....

Nic Collaborator

I would probably ask the pediatrician for his thoughts. It wouldn't hurt to call ahead and explain your concerns. My doctor would never vaccinate while sick with a virus or bacterial infection but my son was sick most of his life with Celiac before he was diagnosed at 4 and he was vaccinated throughout that time. No one seemed concerned about it. I would ask the doctor.

Nicole


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gfgypsyqueen Enthusiast

Thanks for all the replies. Sometimes I just need a reality check to make sure I am not going off the deep end with the everything affects allergy/celiac issues.

Background: Older child has anaphylactic nut allergy. 2 yr old has no Allergist diagnosed allergies. She has a reaction to dairy and shellfish. Gastro agrees with Dairy reaction. He claims it is a lactose intolerance. Since she reacts to trace amounts of dairy, whether it is a lactose intolerance or true allergy really is not that concerning to me. The fact that the same reaction comes from Dairy and shellfish makes me believe it is an allergy. I am setting up an allergist appt. Had one that I had to cancel already.

I cancelled the vaccinations catchup appt for now.

We will be starting the gluten-free diet on the 2 yr old possibly next week or the following.

Also debating about the Entero lab avenue. Would this be helpful for us....unsure.

*Haven't heard the "little bit pregnant" comment before. That's great. You may have a point that I hadn't thought of before. They couldn't prove that she did not have celiacs. So she has enough damage from something in those intestines.

Fiddle-Faddle Community Regular
I would probably ask the pediatrician for his thoughts. It wouldn't hurt to call ahead and explain your concerns. My doctor would never vaccinate while sick with a virus or bacterial infection but my son was sick most of his life with Celiac before he was diagnosed at 4 and he was vaccinated throughout that time. No one seemed concerned about it. I would ask the doctor.

Nicole

Unfortunately, many doctors DO vaccinate when the child is sick, as long as they don't have a fever. And, of course, celiac disease does not cause a fever!

I'm starting to suspect that most pediatricians only know what they were taught in medical school as far as vaccines go. Our pediatrician, whom I like and respect, told me that, to his knowledge, the first MMR only lasts 5 years or so, which is (he believed) why a second one was required before entering kindergarten.

But when I did a bit of Internet research, I found out that the second MMR is only required because 5% of the kids who got the first one did not develop immunity. Interestingly, I could not find out whether or not that same 5% developed immunity after the second shot. (Maybe they do, but I couldn't find any study or research saying so.)

But the frightening thing is, our pediatrician really believed that EVERYONE needed that second shot in order to be immune. And 95% of the kids who get that second shot don't need it.

The reason I was researching this is that our son was "overdue" for the second shot, and we didn't want him to get mumps as teenager and risk sterililty, The mumps-only shot does contain thimerosal, so that was out, So we did a titer (a blood test that measures immunity), and the pediatrician told us not to get our hopes up, as the original shot (he believed) only lasted 5 years, and our son was already 10.

Lo and behold, his immunity levels were 4 times the minimum--which was what made me think, "this doesn't make sense," and start researching the MMR.

Edit: "How effective is this vaccine?

Approximately 95% of individuals become immune to mumps after a single dose of vaccine. The second dose of MMR vaccine is intended to produce immunity in the 5% of persons who did not respond to the first dose." from Open Original Shared Link

Esther Sparhawk Contributor

I'm convinced that my daughter was poisoned by vaccines at six months old. At that time, we didn't know she was a celiac, and we couldn't figure out why she wasn't growing. She had skin problems, cronic diarrhea, and a strange "smoker's caugh" by six months old. Otherwise, her personality seemed fairly normal --little fussy, probably due to the stomach discomforts-- but that was all.

When we went in for immunizations at six months, she had a very odd reaction. She went from docile baby to Frankenstein. I remember, about two days after that six-month immunization, she was told "No" about something or other, and then she freaked out and started banging her own head on the wooden part of her bed. She also showed odd signs which reminded me of autism shortly thereafter: flicking the light switch and staring at lights when she was being changed, opening and closing a lid like she was stuck in a feedback loop, and screaming in fear when we turned on the television or radio. Later, she also had difficulty remembering new words and she started to forget words she had previously known.

Now these symptoms continued to persist and even increase, until we got her on the celiac diet. However, I chose not to immunize her, because (in spite of my doctors' advice to the contrary <_< ), I knew something went seriously wrong after that first immunization at six months. Once we figured out that my daughter was a celiac (age 2), her "autistic-like" symptoms slowly started to disappear-- the diet was having a positive impact. By age 3, there were no autistic-like symptoms left, and her personality did a 180 degree turn :D !

I thank God that I had the courage to tell my doctors to go to heck. They kept saying "immunize her! There's nothing wrong with your kid!" but I knew better. My advice to you is, keep your child on the celiac diet for at least one full year before you continue updating those immunizations.

After what we've gone through with our daughter, my husband and I firmly believe that there IS a link between autism and digestive disorders like celiac disease. And that link is immunizations. Have courage, stay strong, and wait until your child is 100 percent healthy before you immunize!!!

Nic Collaborator
Edit: "How effective is this vaccine?

Approximately 95% of individuals become immune to mumps after a single dose of vaccine. The second dose of MMR vaccine is intended to produce immunity in the 5% of persons who did not respond to the first dose." from Open Original Shared Link

This is interesting because 5 years ago my friend, who was about 28, was told after she gave birth by c section that she was no longer immuned and needed to be re-vaccinated with MMR. Seven months later, I was in the same situation and in the same hospital and was told the same thing. In between my sister gave birth in this hospital and was not told this. So both me and my friend were now no longer immune, how many other people are not either. We were born in the same month of the same year, I wonder if that is a connection.

Fiddle-Faddle Community Regular
This is interesting because 5 years ago my friend, who was about 28, was told after she gave birth by c section that she was no longer immuned and needed to be re-vaccinated with MMR. Seven months later, I was in the same situation and in the same hospital and was told the same thing. In between my sister gave birth in this hospital and was not told this. So both me and my friend were now no longer immune, how many other people are not either. We were born in the same month of the same year, I wonder if that is a connection.

What made your doctors and your friend's doctors say that you are no longer immune? Did they do a blood titer? If not, then I would suspect they are simply parroting what the pharmaceutical industry told them...the pharm industry is the only one profiting when 95% of the population get re-vaccinated for a disease to which they are already producing antibodies.

New Mama Rookie

I have not had my son (almost two) immunized at all and I don't plan to. There are lots of other parents out there like me, too. I've heard too many horror stories and am not convinced that the pharmaceutical companies are acting in our children's best interests. In fact, I'm pretty sure they're not.

Adelle Enthusiast

If I were you, I'd wait till ur kid is healthy before giving them vaccines. And do it slowly. It scares me that ur doc would play "catchup" with vaccines!! One at a time!! Good for you for postponing. The last thing you need is a negative vax reaction on top of everything!

gfgypsyqueen Enthusiast

Thanks for all the advice!

I really like this pediatrician. I am saying catch up on vaccines. But, atleast right now, I think the doctor and I are at an understanding about how the kids health is handled. He and I are a team. We talk and negotiate. It's kinda of funny really. Any way, yes, we will be doing the one at a time catch up. My bigger problem is that day care needs her to be up to date...that may be my biggest issue. I don't have any other options like staying home. I have to be at work. still not sure about these shots....but it has been put off a few more months for now.

EmmaQ Rookie

I stopped vaxes when my ds2 was having problems. I have waited until all his health problems have been answers and we are still working on some answers.

I will say that there is a connection to Measles and the gut, this includes the measles vaccine. The gut connection is the main reason I have never had my ds2 vaxed for measles.

Some doctors do not recognize what good health is and what it isn't. I know what my ds2 was like and the doctors were not with him 24/7 to make that judgement call.

bluejeangirl Contributor
I have not had my son (almost two) immunized at all and I don't plan to. There are lots of other parents out there like me, too. I've heard too many horror stories and am not convinced that the pharmaceutical companies are acting in our children's best interests. In fact, I'm pretty sure they're not.

ditto my sons are now 23 and 25 and never been sick. They were born in the 80's too where they think alot of the autism cases were link to the vacines.

Gail

Lolabell Newbie

Hold off as long as you can....PLEASE. Use a religious exemption or a note from the Doctor, (If he is really willing to work well with you on the issue) for daycare. Never give an unhealthy child a vaccine, and never give a healthy child more than one at a time!

I have a 15 yr old son who has been gluten-free/casein free for 7 years. On 1-12-94 He was a normal healthy 18 month old. I took him to the clinic for his vaccinations like I thought all good parents do. They gave him his final Hib, first MMR, his final DTaP & final Polio vaccinations. Before the jabs, they first scolded me that I should have been in a few months earlier. I then held him down and allowed them to inject my baby with 8 diseases, Thimerosal, and a host of other preservatives.

Long story short...five days of explosive diarrhea. I seriously thought he was going to die. He went into a complete brain fog that he never came out of. He literately was poisoned before our eyes. Doctors blamed the reaction to a stomach flu that was going around. I know different. He was diagnosed autistic within the year. The best plan of treatment was healing his leaky gut. He is still autistic...but now high functioning instead of his previous low functioning.

Son #2 is NOT vaccinated. He 8 yrs old and his only illness has been the chicken Pox. (And an occasional cold). He got the Chicken Pox from a (pox)vaccinated child. Every vaccinated child in his class STILL got it. Son #2 is extremely bright, and extremely healthy. Of course he has also been brought up basically gluten-free/cf (until he started school) because I thought it better to start him out young in case I ever did need to change his diet.

Sorry to ramble. I'm very passionate about this subject. I saw it happen before my eyes. I had never heard of autism back then, I just knew that the vaccines changed my baby and no one (doctors) would listen. It wasn't until several years later did I start meeting others who had very similar stories.

2boysmama Apprentice
Thanks for all the advice!

I really like this pediatrician. I am saying catch up on vaccines. But, atleast right now, I think the doctor and I are at an understanding about how the kids health is handled. He and I are a team. We talk and negotiate. It's kinda of funny really. Any way, yes, we will be doing the one at a time catch up. My bigger problem is that day care needs her to be up to date...that may be my biggest issue. I don't have any other options like staying home. I have to be at work. still not sure about these shots....but it has been put off a few more months for now.

If you're really feeling that unsure about the shots, you can get an exemption - either medical or religious/philosophical (depending on whether or not you meet the criteria for a medical exemption). If nothing else, you can get it just to allow you time to make up your mind or take the vaxes slowly. You can always get the vax whenever you want (or not at all), but you can't UNdo it.

I don't have my younger son vaccinated at all (and BTW, the daycares HAVE to accept the exemptions). At some point I *may* consider the DTaP, but for now we're holding off.

bluejeangirl Contributor
Hold off as long as you can....PLEASE. Use a religious exemption or a note from the Doctor, (If he is really willing to work well with you on the issue) for daycare. Never give an unhealthy child a vaccine, and never give a healthy child more than one at a time!

I have a 15 yr old son who has been gluten-free/casein free for 7 years. On 1-12-94 He was a normal healthy 18 month old. I took him to the clinic for his vaccinations like I thought all good parents do. They gave him his final Hib, first MMR, his final DTaP & final Polio vaccinations. Before the jabs, they first scolded me that I should have been in a few months earlier. I then held him down and allowed them to inject my baby with 8 diseases, Thimerosal, and a host of other preservatives.

Long story short...five days of explosive diarrhea. I seriously thought he was going to die. He went into a complete brain fog that he never came out of. He literately was poisoned before our eyes. Doctors blamed the reaction to a stomach flu that was going around. I know different. He was diagnosed autistic within the year. The best plan of treatment was healing his leaky gut. He is still autistic...but now high functioning instead of his previous low functioning.

Son #2 is NOT vaccinated. He 8 yrs old and his only illness has been the chicken Pox. (And an occasional cold). He got the Chicken Pox from a (pox)vaccinated child. Every vaccinated child in his class STILL got it. Son #2 is extremely bright, and extremely healthy. Of course he has also been brought up basically gluten-free/cf (until he started school) because I thought it better to start him out young in case I ever did need to change his diet.

Sorry to ramble. I'm very passionate about this subject. I saw it happen before my eyes. I had never heard of autism back then, I just knew that the vaccines changed my baby and no one (doctors) would listen. It wasn't until several years later did I start meeting others who had very similar stories.

Lolabell, I'm so sorry what happened. Its so sad, and this really sickens me. My hope for you is that you get lots of support and hopefully some day they'll get to the bottom of this. Its my belief they have but the politics of food and medicine are shaped by the heavy hand of propaganda in television and media. T.V.news accept large contributions from billion dollar drug companies. There is very little free press in America today. Notice how many commercials for drugs while watching the world news.

Did you know that Eli Lilly for example mysteriously found its way into the Homeland Security Bill in Nov. 2002. Buried within a 450 page document was an outrageous clause that provides security to Eli Lily from thousands of potential lawsuits against them by families of autistic childres who believe that their kids condition is linked to thimerosal a mercury based preservative made by Eli Lilly that used to a common ingredient in vaccines.

How did this mystery clause find its way into the homeland security bill no one knows. Or no one is talking. It took weeks to uncover the provision because it was secretly slipped into the bill sometime over the weekend before it was passed. Eli Lilly contributed $1.6 million in the last election cycle. This type of deal making goes on in Washington every day and affects everyone.

I want to say more but I don't want to cause a stir. I said what I said to maybe provoke thought and please do research on this subject. Be careful of the source. Consider the power of the drug companies using fear tactics. And follow the money trail.

Gail

Gail

New Mama Rookie
I have a 15 yr old son who has been gluten-free/casein free for 7 years. On 1-12-94 He was a normal healthy 18 month old. I took him to the clinic for his vaccinations like I thought all good parents do. They gave him his final Hib, first MMR, his final DTaP & final Polio vaccinations. Before the jabs, they first scolded me that I should have been in a few months earlier. I then held him down and allowed them to inject my baby with 8 diseases, Thimerosal, and a host of other preservatives.

Lolabell, I am so sorry about your son.

Just today a friend whose family was over last weekend called to tell us that they think their younger daughter (who had not yet received the MMR) has the measles. We don't vax, as I mentioned, and I'm not super worried about it because I'd rather my son get it now than when he's a teen or an adult. If he starts getting sick I'll make sure he gets lots of supplements and rest. But anyway the friend also left a snarky message on my DH's voicemail at work saying, "I know [New Mama] has chosen not to give Henry the MMR because she believes the fallacy that it causes autism." (I only mentioned vaccines once two years ago because the wife is a doctor and I wanted to hear her opinion. We have never discussed it since, and I don't necessarily believe there is a direct link -- there may be other factors involved.)

I just hope someday the truth about vaccines becomes mainstream knowledge.

Guest cassidy

I've done a lot of research on this and I'm not vaccinating my son. There is a great book that is very balanced by Stephanie Cave called What your doctor may not tell you about vaccines. If you choose to go ahead with them it recommends spacing them out and taking immune boosting supplements before and after. As far as daycare needing them, the religious exemption should work.

Hope she feels better soon.

Rainphire Newbie

Chiming in here.

I vax-ed my 1st until his 4y.o. shots...

Then I started learning about the vaxes

Ds2 and DS3 are

not vaxed at all!

for me, the risks *do not* out weigh the benefits...

not to mention that they don't really work.

My main justification is that the Govmt has an agency to report to when there are negative reactions, and a fever/sore leg IS a negative reaction...

If a daycare recieves ANY govmt support such as child-care subsidies, or anything else like that then they HAVE to accept non-vaxed or behind schedule vax-ed children when they are accompanied by a religious or medical exemption...

AndreaB Contributor

I fully vaccinated my first through the 6 year shots. Mostly vaccinated my second through the 2-3 year shots and barely vaccinated my last through the 2 month shots. If I would have learned earlier I would not have had vaccinations either.

My oldest has started through some alternative testing called ART/ASYRA with LED treatments and has been found to have Hep B and Mumps come up on the vaccinations. Something with those 2 is causing her problems.

I will be testing my other two in September.

If you do decide to vaccinate wait until your child is two years and then give only one at a time. Dr. Russell Blaylock suggests to skip all live vaccines and to space any you do get at one every 6 months to give the system time to "get over" it.

lfij Newbie

just out of curiosity, have vaccines changed since people who are now adults recieved them? One would think they would have become "safer", or is it the same ol stuff that kids are getting now? thoughts?

and, can kids get into school without any vaccinations or real religious cause to not recieve them?

(I don't have children yet, but am curious for when I do)

thanks in advance =D

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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