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

This May Well Be The Answer


red345

Recommended Posts

red345 Apprentice

--


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

But there are studies which demonstrate that overall quality of life does not decrease after going gluten free. There are plenty of people who eat gluten-free (for numerous reasons) who do not experience these issues. There has been studies done linking the fact that celiac grains - those that replace the space that wheat/oats used to take in our diet - are not required to be fortified, and hence folate intake, for instance, is often much lower in celiacs who still base much of their diets on grains. And there are gluten-free sources of beta glucan that don't require supplementation, including corn bran and mushrooms and baker's yeast. I would also not use it as a differentiator between celiacs and non celiacs as barley and oats (not wheat) are the primary source, and on the whole, the standard American population has a diet high in neither.

I'm not disagreeing that this substance is important; there's plenty of research on the issue readily available. I merely disagree that it is THE answer.

As a side note, increase of a substance that will _increase_ immune function is generally NOT recommended for rheumatoid arthritis, since it will _increase_ the disease process.

red345 Apprentice

--

Nadtorious Rookie

I have to disagree too. Your mom's cholesterol probably rose because, once diagnosed with celiac disease, she was absorbing nutrients in foods she was not getting before, and the side effects of the beta blockers (lowering "good" cholesterol, raising bad) were finally able to become apparent. Just because she had health problems AFTER she was diagnosed and switched her diet does not mean that a gluten free diet caused the other health problems. Usually the case with celiacs that are having more health issues post diagnosis is contamination in the diet. The gluten free diet needs to be personalized for every celiac, because most have other food intolerences as well, plus everyone has a different sensitivity level.

I guess I just don't get what you're hinting at. That we should stop the gluten free diet because it's actually hurting us? That there is a correlation between beta blockers and the development of celiac disease??? I need a better explanation.

:blink: Nadia :blink:

red345 Apprentice

--

debmidge Rising Star

Being from a family of pharmaceutical chemists, I have to throw this idea in: many pharmaceutical compounds actually do come from nature. They are not just making chemicals up in a lab. They'll use certain tree bark for aspirin or herbs or enzymes from other animals, estrogen from natural sources, etc. I am talking about bona fide drug companies, not herbal medicines.

It's our bodies that decide how they want to use them....

With all due respect, it appears to me that the rheumatic fever history is a player in this scenario and the celiac was perhaps triggered by her deteriorating immune system. With rheumatic fever patients, the damage shows up in the later years, if it has been silent before.

It appears to be very coincidental that her cholesterol numbers rose over the past 8 years. Also, what could be driving this is post menopausal high cholesterol. Remember, estrogen protects women during their menstrual years against heart problems. Once estrogen goes below a certain level, women's heart disease risk equals that of men. Let's throw this thought out: your mom's celiac trigger was around the end of her menopause 1998 or earlier - her system wasn't absorbing her fats (my husband's particular problem too) -- then the gluten free diet reverses the intestinal damage and she show is absorbing again and that combined with loss of estrogen, she has elevated cholesterol levels. This all comes at the same time as other medications (beta blocker) , which obscures the logic. Let's also keep in mind that if her liver function was slightly abnormal, that too can contribute to high cholesterol, as it's the liver which makes cholesterol.

I work with an elderly gentleman who first got trigged for celiac disease about 6 years ago when he was operated on. He was about 70 when he got celiac disease.

Have the heart doctors ever said that she'll need heart valve replacements in the future?

I see so many potential "older person" triggers glaring up at me here. I can't be certain that the substance called Beta Glutens is the culprit.

debmidge Rising Star

* show should be "now" as "she now is absorbing again"


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



Celiac.com Sponsor (A8-M):



red345 Apprentice

--

lovegrov Collaborator

"But you don't "Just get" Celiac Disease when you're in your late 50's. "

Why not? You "just get" other autoimmune diseases at that age. Why not celiac?

richard

strack2004 Rookie

Red345, What is the name and author of the book you mention at the beginning of your Oct. 13 post? Thanks, Ruth S.

tarnalberry Community Regular

you absolutely can "just get" celiac at age 50. while you may always have the genes for it, it is commonly accepted that a trigger occurs that causes that gene to be expressed. that means, until it's triggered, there is not immune reaction to gluten, though it can develop at any time.

red345 Apprentice

--

gf4life Enthusiast

I don't have a problem with your theory, you are certainly entitled to it, but I do have a question. How was your mother diagnosed with Celiac? Was she blood/biopsy diagnosed? Does she have the genes? Just curious since you say she was nutritionally absorbing well, and she wasn't having weight problems, I was wondering how the doctors even got around to that diagnosis. Most of us with severe symptoms can't even get our doctors to run the tests, let alone get a diagnosis without practically being on our deathbed (at least that was my experience, and many others here on this board).

Also you don't mention why she was on the beta blockers in the first place. Has that condition changed so that she no longer needs to be on them, and was it so severe that she even should have been put on them in the first place?

In my opinion beta blockers are just not a good medication for anyone. I looked at the list of possible side effects from taking beta blockers and I am not surprised that it was so long.

Open Original Shared Link There has got to be a better solution to the heart related problems that most people take this for.

I have numerous friends who were put on them for high blood pressure and then got very ill from the medication. At that point you have to judge for yourself if the side effects are worth it. Most of my friends have found they do better OFF the medication. And those are non-celiac friends. As Celiacs we have enough to deal with without taking drugs that cause us to have other problems...

LUAP Newbie

red 345, may be beta blockers are

enigma Newbie

LUAP - That was SO interesting! I really liked your comment on how all the doctors know to do is tell us not to eat gluten, which we are glad to know, of course, but it is so evident that more research is needed on this strange disease. One day, maybe even in our lifetime, someone will find the answer!

LUAP and red345 - I agree about the beta blockers. I've heard bad things about them for years so when my doctor suggested I start them for hypertension I am SO glad I asked her for a different drug. Maybe this should be a warning to others who are asked to take them. There are almost always alternatives.

red345 - I wanted to let you know that I had the symptoms of Lupus first, for about 2 years, before they found celiac. Going gluten free hasn't induced any further health problems for me and it's been nearly 15 years. As a matter of fact, going gluten free seemed to clear up many of my symptoms of Lupus. My weight and cholesterol are good (I follow a low carb diet) and I've never heard of hypertension (my only "new" health problem) being related to celiac disease.

red345 Apprentice

--

debmidge Rising Star

RED, The subject is fascinating...I will await your conclusion post. I didn't realize Aminos were that powerful...I agree with you on the numbers of celiac for future. They are in our midsts and don't know it.

darlindeb25 Collaborator

WOW, that's all i can think of to say right now--WOW--i have been reading this post all along and it is starting to make sense to me--WOW--deb

red345 Apprentice

--

strack2004 Rookie

Red345: To reply to your new questions: So far as I know there is no history of alchoholism in either side of my family. My parents were either the youngest or among the youngest of large families. We had little to do with the older members of these families and alcoholism wasn't mentioned by my parents so far as I remember. Depression and/or mental illness: An uncle on my father's side was committed to a mental hopital and eventually committed suicide. One of my mother's sisters was very depressed . My Mom said that my uncle didn't know what to do any more. No more details. She may have been in menopause. My youngest sister has an extremely high intelligence, but cannot function well with others in various ways. She had trouble functioning in school settings. She remembers everything to the last detail, will talk on and on about various medical, scientific subjects and remembers our past in detail. She has with help been able to make a life for herself that seems to be satisfactory. A sister of my father also had a lot of trouble with relationships. Seldom seemed to be happy. My oldest daughter was diagnosed at one time with bipolar problems. She also is highly intelligent . My second daughter has pre-diabetes, ( she insists it is pre.) She and my sister are grossly overweight. I have been up as high as 190 lbs. myself, at one time. Leveled off at 150-160 up and down. On celiac diet (SCD) am down to 130 last time I saw the doctor.

The last part of your Oct. 25 post rings a bell for me. I would think it might well be possible for a test to be signaling a reaction to glutamine in bread rather than necessarily to gluten, maybe to both. Can't tell since they aren't looking for the glutamic acid. . Would love to know the title and author of the book you referred to in a recent post. When you get time. Cheers! Ruth S.

strack2004 Rookie

Red345: To reply to your new questions: So far as I know there is no history of alchoholism in either side of my family. My parents were either the youngest or among the youngest of large families. We had little to do with the older members of these families and alcoholism wasn't mentioned by my parents so far as I remember. Depression and/or mental illness: An uncle on my father's side was committed to a mental hopital and eventually committed suicide. One of my mother's sisters was very depressed . My Mom said that my uncle didn't know what to do any more. No more details. She may have been in menopause. My youngest sister has an extremely high intelligence, but cannot function well with others in various ways. She had trouble functioning in school settings. She remembers everything to the last detail, will talk on and on about various medical, scientific subjects and remembers our past in detail. She has with help been able to make a life for herself that seems to be satisfactory. A sister of my father also had a lot of trouble with relationships. Seldom seemed to be happy. My oldest daughter was diagnosed at one time with bipolar problems. She also is highly intelligent . My second daughter has pre-diabetes, ( she insists it is pre.) She and my sister are grossly overweight. I have been up as high as 190 lbs. myself, at one time. Leveled off at 150-160 up and down. On celiac diet (SCD) am down to 130 last time I saw the doctor.

The last part of your Oct. 25 post rings a bell for me. I would think it might well be possible for a test to be signaling a reaction to glutamine in bread rather than necessarily to gluten, maybe to both. Can't tell since they aren't looking for the glutamic acid. . Would love to know the title and author of the book you referred to in a recent post. When you get time. Cheers! Ruth S.

strack2004 Rookie

Sorry, I pressed "add a reply" twice. Hope someone removes the second post soon. Ruth

darlindeb25 Collaborator
<_< well red--my dad is the youngest in his family and my mom is the next to youngest--no alcoholism in my family either--my mom doesnt know who her father is, so i cant say there--shocked me when she told us about him--i was in my 30's and all of a sudden i didnt know who i was--weird feeling--anyways i suffered panic attacks, but was never told of anyone else in the family who did, i think it was my celiacs that caused a chemical imbalance that caused the panic attacks--i do have a son who i sometimes worry may be bi-polar--he does have emotional problems--blames me for all of his problems--really blames his dad but yells at me--he can be happy one minute and off the wall the next-my daughter has a tendency to fly off the handle too, but sometimes i feel its because her dad spoils her--guess i am not much help--sorry, deb :(
red345 Apprentice

--

Lorifran57 Newbie

I don't know if my reply is of any assistance or of good info in regards to fiber and such but here goes...whatever the food balance issue there are foods that can fulfill the needs of fiber and such that are not just in the grains we miss when eating gluten free.

example...brussel sprouts contain a days fiber if you eat 6 or so of them,large ones a day.

other varients in nutrition are...a good portion of broccoli rabe is equivalent to the iron in one steak.

i am 40.

i was vegan for two yrs while we were trying to find out what was wrong with me and then 'stumbled' across the gluten issue as the problem. My nutrition itself remained balanced due to careful monitering of the vitamins and other things needed in various foods. But now i am eating meat again in the past year and am healthier than i have ever been on a gluten free diet and i have epilepsy all my life with seizure meds which all has its effect on me at times.

Check out some of the vegetarian websites,specificly vegan sites. many people who are vegan specificlly suffer from malnutrition in areas of foods cut out but this is not needed if one follows the proper balance of foods containing certain enzymes and chemistry including things such as fiber.

I also take a tablespoon or 2 of hemp seed oil everyday to balance the intestinal tract which i notice can feel a bit,'off' on a gluten free diet lifestyle.

These are just suggestions,i am no doctor but my neurologic issue has made me very concious of learning what i can to make my life as healthy as possible.

The blood tests for me came back negative for gluten testing but my body says different and the diet now since summer 2003 has made a major difference in my health and when i cheat i do become ill so there is definitely a connection. ALSO...my mom has celiac. My dad figured my problem out with my system thank god.

i go for blood tests and check ups regularly for the epilepsy and the doctors are aware that i am following a gluten free diet and so they look for everything and all they can say is whatever i am doing....keep doing it.

All i can say is just check out the other resources too if you haven't. :)

Just keep looking there are ways to compensate for what is not being eaten.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,133
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.