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

I Need Gluten!

VydorScope

By VydorScope
in Coping with Celiac Disease

Recommended Posts

shayesmom Rookie
shayesmom
Posted
I realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy realy hate to admit it, but dairy being gone from my diet now I am very sad to admit, I think I am diary intolerent (even though got a 0 on IgE for both casien and whey).

Sorry that this is such a tough one to deal with but I am glad that you are feeling enough of a difference as to be able to pinpoint the food that's causing you distress. Dairy products were one of my favorites until January 2006 when I gave it up completely to see if it was a problem for me. Sure enough. The funny part is that 2 weeks prior, I had told dh "thank goodness that we don't have to avoid dairy as opposed to gluten! I don't know what I would do!!". LOL!! I should have kept my mouth shut! I completely understand the emphasis on REALLY hating it. I had to completely overhaul the kitchen for 6 weeks straight to get out of my old dairy habits (butter here, milk there, cream in there).

Not to be a stick in the mud, but casein and gluten are so closely related in how they affect the body, I don't know if you'll be able to get gluten back in your diet. And then there's soy....

In any case, I hope that the challenge works out for you (AKA....that the results favor whatever response you would prefer :D ) And I also hope that by avoiding dairy your anemia goes away. Gotta love how the staples in our standard diets are messing us all up! lol!!

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

Celiac.com Sponsor (A8-M):


  • Replies 64
  • Created
  • Last Reply
bluejeangirl Contributor
bluejeangirl
Posted

Its funny how this seems like a reality show/thread to see if there is a reaction to Vincent's gluten challenge.

VydorScope Proficient
VydorScope
Posted
  • Author
Its funny how this seems like a reality show/thread to see if there is a reaction to Vincent's gluten challenge.

:lol::lol::lol: Eating a 3rd bowl... man if this is a delayed reaction tommorow gonna realy suck!

Guest BERNESES
Guest BERNESES
Posted

Oh boy- this is gonna be interesting! Vincent- For your sake, I hope it's one or the other, but not both (gluten and dairy). I've always said that dairy is much more delicious than gluten because gluten-free pasta, etc. is pretty darn good. But i have yet to find a dairy replacement (OK- read CHEESE whenever I say dairy) that's not soy based (I definitely do NOT tolerate soy well) that even remotely tastes like dairy. So, i hope you get what you're wishing for....painlessly! hang tough!

VydorScope Proficient
VydorScope
Posted
  • Author
Oh boy- this is gonna be interesting! Vincent- For your sake, I hope it's one or the other, but not both (gluten and dairy). I've always said that dairy is much more delicious than gluten because gluten-free pasta, etc. is pretty darn good. But i have yet to find a dairy replacement (OK- read CHEESE whenever I say dairy) that's not soy based (I definitely do NOT tolerate soy well) that even remotely tastes like dairy. So, i hope you get what you're wishing for....painlessly! hang tough!

I much rather be gluten intolerent then dariy. :( Ah well we dont get to choose, so jsut gotta deal and move on....

StrongerToday Enthusiast
StrongerToday
Posted

I did a wheat test a while back (never realized how tasty wheat thins were!) and it wasn't until my 3rd day that I started to feel it and then *wham* did it hit!

Berneses - I have to agree with you! Giving up dairy (CHEESE) is so much harder. There are so many gluten-free alternatives out there... but nothing replaces good old dairy products. I miss them so!

VydorScope Proficient
VydorScope
Posted
  • Author

WEll if it takes that long I'll get matoh next probably. Cereal almsot gone LOL.

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

Celiac.com Sponsor (A8-M):


Mango04 Enthusiast
Mango04
Posted

You should eat some really yummy bagels (I can't believe I'm advising someone to eat bagels!). The flour in bagels is supposedly really really gluteny.

Guhlia Rising Star
Guhlia
Posted

When I did my gluten challenge prior to endoscopy, I got so sick that I couldn't even have my endo. The interesting part was that it took a month and a half for me to react to the gluten. When I did react though, it was pure torture! I was in bed for almost a week because I was so exhausted and the bathroom was my best friend.

Good luck, Vincent!

Guest nini
Guest nini
Posted

Vincent hon, keep in mind that some people with Celiac or gluten intolerance DO NOT get immediate symptoms or even an obvious delayed reaction

VydorScope Proficient
VydorScope
Posted
  • Author
You should eat some really yummy bagels (I can't believe I'm advising someone to eat bagels!). The flour in bagels is supposedly really really gluteny.

heheh I could have my old stand by of BLT on Cinimon Rasin... but are begeal DF???

Mango04 Enthusiast
Mango04
Posted

Yes, bagels are generally DF (check ingredients - but I ate them allll the time when I was only DF).

VydorScope Proficient
VydorScope
Posted
  • Author
Vincent hon, keep in mind that some people with Celiac or gluten intolerance DO NOT get immediate symptoms or even an obvious delayed reaction

Nini, hon, :) Suuuuuurrrree... but if I have no symptons, no postive bloodwork, nothing in the 2 biposyies, why should I suspect it? Milk intolerence lists anemina as a sympton, and thats the only postive celiac disease related thing I have. Oh bone loss, but again milk would could do that... so then if I do not end up with any symptons this week, I will assume milk was the issue, and stay mostly gluten-free for my sons sake.

Guest nini
Guest nini
Posted
Nini, hon, :) Suuuuuurrrree... but if I have no symptons, no postive bloodwork, nothing in the 2 biposyies, why should I suspect it? Milk intolerence lists anemina as a sympton, and thats the only postive celiac disease related thing I have. Oh bone loss, but again milk would could do that... so then if I do not end up with any symptons this week, I will assume milk was the issue, and stay mostly gluten-free for my sons sake.

just a friendly reminder that's all, why would you suspect it? oh I don't know... does your wife have it? Tymber had to get it from someone, also I didn't know dairy intolerance could cause your anemia?! I don't know the answers, and I whole heartedly admit that I'm of the opinion that gluten is toxic for everyone. SO, that being said, I was just offering an observation and friendly reminder! (besides I'm feeling a lil cranky, I think I got glutened today and a few days ago...)...

shayesmom Rookie
shayesmom
Posted
I didn't know dairy intolerance could cause your anemia?!

Oh yes. Dairy (especially homogenized, conventional and pasteurized) can cause all sorts of lovely problems....just as many as gluten actually. But it's really difficult to find reputable internet sources which outline it in enough detail that you can research it effectively. The most interesting article I have found is this one: Open Original Shared Link Keep in mind, that this article is geared more towards children but if you then start searching for milk allergy induced anemia....the info starts coming in. I have found that two of the best places to begin these searches on foods and nutrition are mercola's site and the Wellbeing Journal (their on-line articles are controversial, will prompt a flurry of denials in your head and yet check out pretty consistently when you go onto medical sites like The Lancet and/or experiment on yourself....which really is the best way to find out if a theory holds water....as long as the experiment isn't a serious health-risk).

It also helps to run searches on specific foods and cancer. Dairy is a known contributor to the cancer epidemic. Many prostrate cancer patients are often told to avoid ALL of it to help prevent the disease from spreading. Made me wonder why dairy is touted as so healthful if it assists in the proliferation of cancer cells (prostrate, breast and uterine that I know just off-hand). Yet the only time you are told not to consume it is when you have an anaphylactic reaction to it or have cancer. Every other time, it's a VITAL part of a "healthy" diet.

This was also a factor in why I began seeing a homeopath/MD/nutritionist. Every patient with a chronic or degenerative disorder is told about going gluten/casein-free the first day they walk in the door (and get literature on how to do it). He also addresses other potential food intolerances, environmental allergies, heavy metal exposures, vaccinations and medications and supplements (down to making you bring in all of your medicine cabinet so that he can make sure you're using things that are effective, safe and aren't contraindicated). He also asks for a detailed description of your diet and makes adjustments based on your condition, metabolic type and blood work. Plus, he shares medical literature whenever asked and encourages each patient to question everything and bring their GPs and specialists into the equation for care. My father's GP couldn't believe how thorough and "on the ball" this guy is. lol!! The only fault that I find with him is that he's more against dairy than gluten. :o

It may be of interest to know that even the Journal of Artherosclerosis has linked homogenized dairy to heart disease. It's infuriating to stumble across these articles and studies, take it out of your diet and feel better within days. Just like gluten for most of us. There are times when I wonder who the heck is designing our food pyramid as it's all messed up! lol!! And why are these studies never brought to light?

VydorScope Proficient
VydorScope
Posted
  • Author

OKay, I have eaten almost an entire boxed os SHREDED WHEAT in the past 24 hours. If I had celiac disease I should be dead (okay... but would prbly rather be dead LOL). But I still have no symptons. I will have to get more wheat on my monday trip too food store, but its looking like Im jsut dairy intorlent. I fould a page that lists the symptons of dariy and celiac disease side by side, and they are almost identical.

Bah. I rather be gluten intolerent... ah well. :(

Rachel--24 Collaborator
Rachel--24
Posted

I think if I were in your shoes (and I may be in a similar situation someday) I would proceed with caution since the symptoms could develop over time. Its weird how these intolerances work but I dont think everyone would experience an immediate reaction from gluten...it could build up. Someone with a casein intolerance (I think Mango04??) recently posted that after alot of years dairy free she introduced some dairy...felt fine for a few weeks...then wham...symptoms came back. It would be great if you dont have to worry about gluten but just keep it in the back of your head in case symptoms start to slowly reappear.

VydorScope Proficient
VydorScope
Posted
  • Author
I think if I were in your shoes (and I may be in a similar situation someday) I would proceed with caution since the symptoms could develop over time. Its weird how these intolerances work but I dont think everyone would experience an immediate reaction from gluten...it could build up. Someone with a casein intolerance (I think Mango04??) recently posted that after alot of years dairy free she introduced some dairy...felt fine for a few weeks...then wham...symptoms came back. It would be great if you dont have to worry about gluten but just keep it in the back of your head in case symptoms start to slowly reappear.

Well its not like I will be getting alot of gluten in my diet since the house is gluten-free for my toddler's sake to begin with. Just testing to know if I am out some place.... no gonna hve to learn all the things to be wary of for dairy. Alreadly learned that "NON DARIY CREAMER" is a flipping lie. :(

Mr J Rookie
Mr J
Posted
.......... Just testing to know if I am out some place.... no gonna hve to learn all the things to be wary of for dairy. Alreadly learned that "NON DARIY CREAMER" is a flipping lie. :(

yeah, bloody ridiculous isn't it that products that advertise themselves as non-dairy have written in their ingredient list "SODIUM CASEINATE (A MILK DERIVATIVE) **" where "**" is "Not a source of Lactose" - thats really contradicting the "... IS A NON-DAIRY, LACTOSE FREE, and CHOLESTEROL FREE CREAMER" which is much more prominently displayed on the packaging.

anyway i was replying to say that i have the opposite situation to you VydorScope, enterolab have shown my anti-bodies to be well over the threshold, forget the exact numbers but similar figures for both casein and gluten anti-bodies. actually enterolab are a bit vague regarding the concept of "well over the threshold" and talk about being either over or under as definitive yet mention that just under might be worth diet challenging for intolerance too.

just ran off track of my post again. what I mean by the opposite situation is that i've been completely unable to prove that the casein causes me any digestive distress or other forms of distress eg mental from the opiate effect of those caso-morphin peptides.

i have no doubt that gluten is bad for me. not only did the previously paralysed smooth muscle of my stomach incredibly re-awaken after going absolutely gluten free, but the allergic flow from my nose which would constantly drip when excercising or outdoors in cool weather stop, but I seemed to benefit mentally too...didn't get stressed so easily, life sort of just became more relaxing.

i was fairly systematic and eradicated gluten before dairy - about 2 months of gluten-free but not CF. i showed slow improvement in the symptoms i just mentioned. I then went CF, working all the hidden dairy out diet - including the non-dairy-dairy stuff, my slow improvement continued without any spectular improvement which i was hoping for. by slow improvement i mean really slow improvement, my system is still far from well. Anyway i managed about 4 months or so of CF but a month ago re-introduced dairy - reason for re-introduction? prolly caso-morphin addiction :D

again no perceptible change other than a further micro improvement shift from the plateau i was on. example of improvement is that i am now able to process approx 1/2 oz more protein per day - weigh everything on electronic scales, thats how i know.

no return of my nose allergies, no digestive distress, no constipation (altho i do take a daily herb for that), nothing at all, since the dairy re-introduction. although admitedly objectively monitoring my state of mind is difficult regarding the opiate effect, but my wife hasn't mentioned anything to me, so i assume its still on an even keel.

dairy re-introduction has taken the form of 3 times per week, ingesting 3 3/4 oz of goat milk, 3 oz of goat yoghurt and < 1/2 oz of goat cheese. first 2 figures electronically weighed, but cheese estimated (i do allow myself some slack where i believe i can get away with it, but in general i have to get everything exactly right or risk digestive distress, or neurotic worry of impending distress)

i'm stil abslutely cow dairy free. i know that goat milk is very similar to cows milk whose peptides are similar to gluto/gliadin peptides but practical experience is so far telling me otherwise.

edit--> forgot to say cheers

cheers,

Mr J

cornbread Explorer
cornbread
Posted

That's interesting Mike. I wonder if you would react to cow dairy? I'm Enterolab certified gluten/casein intolerant (plus soy/yeast) and I get awful and immediate symptoms from all of them. I've heard of Gluten-free Casein-free people being able to tolerate goat milk much better than cow milk. I've never liked milk anyway, but there's certainly room in my heart (and fridge) for a cheese alternative. If I could tolerate goat dairy that would be awesome.

lonewolf Collaborator
lonewolf
Posted

Hey Vincent, I'm just wondering if you'll leave us if you are "only" dairy intolerant? Will we have to look for you someplace like Casein.com?

Mr J Rookie
Mr J
Posted
That's interesting Mike. I wonder if you would react to cow dairy? I'm Enterolab certified gluten/casein intolerant (plus soy/yeast) and I get awful and immediate symptoms from all of them. I've heard of Gluten-free Casein-free people being able to tolerate goat milk much better than cow milk. I've never liked milk anyway, but there's certainly room in my heart (and fridge) for a cheese alternative. If I could tolerate goat dairy that would be awesome.

i gave cow yoghurt a brief test about 2 months in to my CF free diet (too early according to some online advice i've seen), no immediate reaction, but then i don't immediately react to anything - my worst moment was when micro amounts of gluten consumed over a period of about a week shut down my stomach smooth muscle function - left me bewildered as to what had gone wrong, and took another nerve wracking week to slowly start functioning again.

direct comparisons are dangerous coz we are all different, but all we can do is post our experiences here and try and get a feel for where we fit in to the melting pot. but the information from this msg board is so much better than theory alone. What i like about it is its quite a cosmopolitan place. many of us aren't even diagnosed celiacs but some other variation of peptide poisoning. I don't have the genetics for flattened villi and the gastro specialist who looked at my intestine via the scope reckons he "can kind of tell" without a biopsy.

cheers,

Mr J

VydorScope Proficient
VydorScope
Posted
  • Author
Hey Vincent, I'm just wondering if you'll leave us if you are "only" dairy intolerant? Will we have to look for you someplace like Casein.com?

No way! I came here for my son who has postive blood work and postive diet for celiac disease, and besides, theres a ton off great CF info here! Sorry your stuck with me for now :)

Will we have to look for you someplace like Casein.com?

LOL I jsut looked.. they SELL casien at that site... no I do no think you will find me there. :)

lonewolf Collaborator
lonewolf
Posted
No way! I came here for my son who has postive blood work and postive diet for celiac disease, and besides, theres a ton off great CF info here! Sorry your stuck with me for now :)

I'm glad we're stuck with you. You make the board a more interesting place.

VydorScope Proficient
VydorScope
Posted
  • Author
I'm glad we're stuck with you. You make the board a more interesting place.

:mellow: *need a blushing icon*

Still no reaction... but did not eat anymore gluten today...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    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

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.