Jump to content
  • 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):

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.

  • 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. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

    2. - Scott Adams replied to N Young's topic in Doctors
      1

      Frustrated with Providers

    3. - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

    4. - N Young posted a topic in Doctors
      1

      Frustrated with Providers

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442

    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
    • Scott Adams
      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors.
    • Scott Adams
      These articles may be helpful:    
    • Jmartes71
      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
×
×
  • Create New...