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

Do I Have Celiacs

rwltz4

By rwltz4
in Coping with Celiac Disease

Recommended Posts

rwltz4 Newbie
rwltz4
Posted

Last 6 months been doing a high protein, low carbs (really only carb has been sweet potatoes) diet, recently got into bodybuilding and main focus has been: meats, brocolli, apples/oranges,spinach,yogurt,skim milk,cottage cheese,sweet potatoes,eggs and peanut butter, green tea and lots of water, pretty much my diet and supplemented with teaspoon of olive and fish oil capsules along with a daily vitamin.

I noticed since making this chancge and giving up grains,breads, I have had no stomach pains, more energy and no bloat, my reason for the switch though was to go low carb for getting thinner though, just happened to notice the bonus effects, just always though I had a sensitive stomach and been told before I had ibs but really never agreed with it, and having no issues for 6 months kind of throws that dx out the window.

Anyhow I added quaker oats and a protein powder to my regimen 3 days ago and as I write this and for last 48 hours or so I have:

extreme diarrehea (sp?)

bloated like a baloon

extreme gas pains

moody, cant focus, agitated

face puffy

ulcres in my mouth

zero and I mean zero energy

groin pains

lower back pains

just fee like going to bed

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

Celiac.com Sponsor (A8-M):


zenmama Newbie
zenmama
Posted

the only way to know for sure would be to get tested. ;)

Mom23boys Contributor
Mom23boys
Posted

I'm not a Dr but it sure sounds like you have some kind of sensitivity. To know exactly what you have you will need to be tested.

njbeachbum Explorer
njbeachbum
Posted

Sounds like typical celiac reactions to being glutened after having gone gluten free. Only problem is that if you get tested, you will get a false negative on the bloodwork since you've been coincidentally gluten free for many months.

Try cream of rice cereal instead of oats.... it's very easy to digest and i enjoy it in the morning for a quick, hot breakfast. Protein supplements will mix very easily into it as well. You will also want to be sure that your protein powder is gluten free as well.

mac8005 Newbie
mac8005
Posted

Looks like a horse, walks like a horse, probably is a horse.

I think you may have just failed the Gluten challenge.

My son had diarrhea for two months straight, and stomach issues and I got the seriological dx 11/29/07. (At first they first said IBS, and I researched and watched him and said no its not do more testing. Yay we found it !)

So he had been gluten-free for 6 weeks, diarrhea gone. Still stomach acid issues.

Anyway, I accidently let him drink a vitamin drink "function house call" which clearly said contains gluten. It was at dinner and after a few bites of food, he stood up and said I don't feel so hot and went to lay down, it was then I grabbed the bottle. Oddly all the other drinks said Gluten Free except this kind.

So, I beleive the body once gluten-free becomes highly sensitive to Gluten and can have a bad reaction with one ingestion. I'm new but I can definitely see it.

rwltz4 Newbie
rwltz4
Posted
  • Author

I looked at the protein powder and it says may contain products derived from wheat,soy and dairy...so there it is.

It is unclear about quaker oats, only says "100% rolled oats"

its been about 12 hours since having the powder, still bloated and feel like crap but pains and trips to the bathroom have ended, also started being itchy which i remember well and use to hate when doctor always told me there seems to be no cause, havent been itchy in months, it all is making sense now.

I also read that some people get depressed and have concentration problems, I find this interesting since I have always had depression and adhd symptoms yet was never given a dx of either disorder, as I look back with new diet which was carb free and also unintentionally gluten free, I have not had much depression or attention problems...hmmm

I would like to get tested but that would mean eating gluten again for awhile though right? not sure if I am willing to go in pain again just to find out.

Lisa Mentor
Lisa
Posted
I looked at the protein powder and it says may contain products derived from wheat,soy and dairy...so there it is.

It is unclear about quaker oats, only says "100% rolled oats"

its been about 12 hours since having the powder, still bloated and feel like crap but pains and trips to the bathroom have ended

Quaker Oats are notorious for cross contamination.

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

Celiac.com Sponsor (A8-M):


rwltz4 Newbie
rwltz4
Posted
  • Author
Quaker Oats are notorious for cross contamination.

really? ok thanks....curious if you personally say had a cup of gluten products what would you experience and how long would it take?

rwltz4 Newbie
rwltz4
Posted
  • Author

can anyone direct me to a list of gluten foods/products so I know what to avoid.

Lisa Mentor
Lisa
Posted
really? ok thanks....curious if you personally say had a cup of gluten products what would you experience and how long would it take?

I have been gluten free for two and a half years and I consider myself in remission. If I did have a cup of gluten, I most likely would not react. Now, if I had a cup of gluten every day for a week, I suspect that I would have classic Celiac (no *s*) symtoms.

Gluten reactions are different in everyone.

If you feel you want to be tested, you must continue to eat gluten or may show a false negative. Here is the Celiac Blood Antibody Tests to request:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

CuriousOne Apprentice
CuriousOne
Posted

Thought I'd chime in...

I've had bad neurological symptoms probably my entire life...but things really started getting bad with me at age 12 for some reason.

I haven't been officially tested yet, but have done the gluten challenge and failed.

I also sorta unknowingly stumbled upon the gluten-free diet a few times the past 2 years. And low and behold I was feeling better. Finally started doing things I wanted in my life, even found a girlfriend who I loved. Then I decided to stop smoking the one or two cigarettes I was smoking daily (probably to replace the opiate feeling I was used to from dairy/wheat stuff)...and in replacement of the smokes I decided I would "let" myself have a scone everyday.

Suddenly I became a different person. My girlfriend even told me that. I didn't know what was going wrong. I just knew that I was becoming the person I was most of my life...the one that was so messed up all the time...my girlfriend broke up with me. Never talked to me again. Its been a year and a half and finally a few months ago I found out about this gluten stuff...I even emailed her on it. whatever...

it just pains me. i have been through SO much pain in my life. okay... deep breath... back onto the topic....

I think its great you found out about this stuff. Like I said we are similar since I intitially was trying low-carb and felt better.

I have my own theories on this gluten stuff. I think our stomach's respond to the gluten by developing mucus plaque in the intestines... that is why it "seems" we can tolerate gluten more in the past then now, after we have been gluten free for awhile. Now...being gluten free...out stomach has eliminated the mucus... so now we can absorb EVERYTHING better...all those nutrients were not being assimilated before while eating gluten...because to protect itself against gluten it created the plaque.

This is similar to the argument for eating raw foods. They say cooked foods are actually somewhat reactive to the gut. So it develops a layer of mucus.

But I'm sorta more in line with DogtorJ.net.... he talks about the main foods that damage the villi being Gluten, Casein, Soy, and Corn. Typically when people go raw they just don't eat those things! So they feel better. But you can also not eat those things without going 100% raw.

So my theory is when you go off gluten...or the foods your gut never liked to begin with.... after a period of time the gut stops producing its mucuid plaque to protect its own self... and thats when you start "feeling" better. Since now your intestines are absorbing more nutrients.

As a child my parents said I would bang my own head against the tile floor when I was irritated. I had many "issues" growing up. I'm also really athletic and smart. I pretty much have been destroyed by this gluten thing. I was supposed to be "destined" for so much. I'm 26 now... and finally feeling "functional"...cept when glutened which has happened now twice. Just graduated college...but its like I'm an infant in some ways. Like my life wasn't hard enough now I have to somehow make it in this world from ground zero.

/rant off

Adelle Enthusiast
Adelle
Posted

I wouldn't bother getting tested. The tests are HIGHLY innacurate. And you already KNOW how much better you feel. You're an adult and you don't need a doctor's permission to quit gluten.

Welcome to the club!! Congrats on getting healthy!

NightOwl Newbie
NightOwl
Posted
I wouldn't bother getting tested. The tests are HIGHLY inacurate. And you already KNOW how much better you feel. You're an adult and you don't need a doctor's permission to quit gluten.

Great reply! I've self-diagnosed accurately several times, when I did choose to go to doctors I was often misdiagnosed and/or their tests either failed (like an expensive allergy test I had to pay for out of pocket which came out negative...) or, if lucky, they just confirmed what I already knew; now that I'm older I listen more carefully to my body and trust its messages.

Incidentally, it was also through low-carb dieting that I discovered my wheat intolerance and I've been thinking of going back to that WOE because I need to lose weight again.

hathor Contributor
hathor
Posted
can anyone direct me to a list of gluten foods/products so I know what to avoid.

https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

Regular oats are always cross-contaminated with wheat. (Only intentional ingredients have to be listed in with ingredients. Any other warnings are voluntary.) There are special, gluten-free oats available. People with gluten intolerance may be able to tolerate those. However, some don't, since the oat protein is similar to that in wheat. I've heard it best to avoid oats altogether until one is sure that their gut has healed.

What is your protein powder made from? You could be reacting to one of its ingredients.

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.