Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

In Desperate Need Of Some Positivity :/


zebaldwin

Recommended Posts

etta694 Explorer

I don't know if you can, but eating from 'the perimeter' of the grocery store and 'kis' might be an idea. Plain fruits, veggies, meat,.. a little salt maybe... . eat that all for 2 weeks. Don't fall for any processed or prepackaged foods for that time. If you can, just do veggies and meat. (fruits exacerbate a yeast problem.) Then try reintroducing.. Just a thought..


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



Celiac.com Sponsor (A8-M):



  • Replies 91
  • Created
  • Last Reply
zebaldwin Explorer

Applegirl,

When you say you had the same issues, which issues? If you had a yeast infection were you having a lot of digestive problems? My main worry is that like most people here I don't have obvious digestive problems...so that discourages me. thanks for your input!

And ya, I have thought of doing just meat and veggies...but that is very hard for me and would mean I am throwing out a $1500 meal plan...not to say I wont try it though! (can't hurt)

zebaldwin Explorer

Is regular dextin gluten free? I bought some dried vegetables to find they had some...and I've been reading mixed opinions on it

I don't know if Tums are gluten-free, but if there is gluten it isn't the maltodextrin. Maltodextrin is gluten-free.

ravenwoodglass Mentor

And ya, I have thought of doing just meat and veggies...but that is very hard for me and would mean I am throwing out a $1500 meal plan...not to say I wont try it though! (can't hurt)

Have you talked to them at the caf? With celiac being more commonly diagnosed some schools are becoming more celiac savvy. The cooks might be able to guide you to safe items.

psawyer Proficient

Dextrin is usually not a source of gluten, but occasionally is.

From the Canadian Celiac Association's pocket guide:

DEXTRIN .. ? CHECK

A slightly sweet polysaccharide obtained b y heating a starch in the presence of small amounts of moisture and an acid. Dextrin is not commonly used in foods. It is almost always derived from ant one of the following gluten-free grains - corn, waxy maize, arrowroot, rice, tapioca. However, in the rare instance when it is derived from wheat, dextrin is not allowed.

In the US, under FALCPA, wheat would have to be clearly disclosed. The Canadian rules aren't quite the same, but hiding any of the ten Canadian "Priority Allergens" is in violation of the intent, if not the letter, of today's rules. So, if it doesn't say "wheat" I would not worry about it.

zebaldwin Explorer

The dining halls have a small fridge with "gluten free things". There are english muffins, cream cheese, brownies, and a really small pizza thing, with a gluten-free toaster. That is really it. And I really can't live off of english muffins...which is my concern :/

I think I might starting eating baked beans too for protein. Read that bush's products are now all gluten free

Have you talked to them at the caf? With celiac being more commonly diagnosed some schools are becoming more celiac savvy. The cooks might be able to guide you to safe items.

cahill Collaborator

Then.. I must be alergic to something in the Tums... I had a reaction to them.

there is corn starch in tums, do you have problems with corn? I had bought a store brand before I realized I had a problem with soy and it contained soy


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The dining halls have a small fridge with "gluten free things". There are english muffins, cream cheese, brownies, and a really small pizza thing, with a gluten-free toaster. That is really it. And I really can't live off of english muffins...which is my concern :/

I think I might starting eating baked beans too for protein. Read that bush's products are now all gluten free

Also check out the microwaveable Hormel Completes. I know their Dinty Moore Beef Stew is safe and they may have a couple others. I used to get the scalloped potatoes and ham and that was safe but I haven't had it in a while and I think the Chicken and Rice may be too but do read the label to be sure.

Edit: Hormel actually has quite a few gluten free items including many that are shelf stable so you could keep them in your room. Here is a link to the list and you might want to make the suggestion at school that they might want to make some of them available in the caf for those who eat gluten-free

Open Original Shared Link

Marlie Apprentice

Taco's are easy to make in that environment. Old El Paso is what we use. Spaghetti is easy. You can buy the sauce gluten free and the Quinoa pasta is indistinguishable from regular wheat pasta. I believe Diamond nuts are gluten free. Just found Bell and Evans gluten free chicken fingers in the frozen food section at Whole Foods. Admittedly, we haven't tried them yet. Bisquick came out with Gluten Free Pancake mix which is quick to prepare. More and more products are going Gluten Free. Many Ore Ida potato products are gluten free including Tater Tots. Five days into the diet it will seem like everything has Gluten but within time you will find that you can eat many things.

zebaldwin Explorer

Thanks guys for the continued info, it is all very appreciated! (just need to absorb and and use it correctly!)

My plan for now is to continue how I am eating (just gluten free, not really worrying about only eating vegetables and eat), do that for another week or 10 days. If I dont feel better at all, I will go to the stricter diet of just all natural stuff for a couple weeks. Hopefully I see some results soon :/ Getting wearier by the day.

Thanks again. If you have any more tips or anything I would love it!

zebaldwin Explorer

Stupid question,

I share a tube of toothpaste with my girlfriend who is not gluten-free. I just read an article saying that could easily contaminate. Is this true? Is that enough to cause a lack of progress for me? Just wondering...and probably over-thinking.

IrishHeart Veteran

Then.. I must be alergic to something in the Tums... I had a reaction to them.

I think TUMS have soy in them? I know store (generic)brands do anyway.They bother me too and I can't eat soy. Just a thought.

IrishHeart Veteran

Stupid question,

I share a tube of toothpaste with my girlfriend who is not gluten-free. I just read an article saying that could easily contaminate. Is this true? Is that enough to cause a lack of progress for me? Just wondering...and probably over-thinking.

No question is stupid! :) Not here, anyway!! It's a learning process and we have all been there.

I tend to "over- think" stuff too because I am being super cautious and tired of feeling crappy! :) . As for sharing ---well, CC is possible from just about anything, I have concluded. If it will sent your mind at ease, get your own tube. ;)

zebaldwin Explorer

Thanks Irish heartv:)

I think I'm also fishing for reasons why I'm not feeling any better :/

IrishHeart Veteran

Thanks Irish heartv:)

I think I'm also fishing for reasons why I'm not feeling any better :/

Zack,

I know what you are doing, kiddo..I did the same thing. Then, I realized I was just making myself crazy with that thinking.

I just reread this whole post so I can try to help.

I am going to give you the mother of all pep-talks now...LOL...ready??!! :D

1.

Here is a link to an article (on this site) listing foods and ingredients to AVOID. You have to learn to read labels. It's a pain in the A$$, but it pays off. It gets easier ...I promise!

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

2. Peanut butters like Jif and Peter Pan have SOYBEAN OIL in them. Get Plain peanut butter. Nothing added. Unfortunately, soy/soybean oil/soy lecithin is used as an emulsier/filler as often as gluten/wheat starch is. That's why SOME people usually just eat plain, pure food at first to heal the gut and see what may be a problem food by adding those top 8 allergen foods back in. (well, 7 because you don't want to add in gluten EVER!)Eliminating dairy for the first 6 months is often suggested to newly diagnosed people because it is difficult to digest. No dairy and no soy accelerates healing--at least it did for me. (I have a problem with soy; but not dairy that I know of)

3. I know what you mean about wanting to feel better RIGHT now!!! :angry: . And wondering what is hampering that progress. I kept being a nervous wreck about everything that went in my mouth. Why wasn't I better?Why wasn't I better? AAACKK!!

But the hard truth is...it is not a quick fix. I wish it were. I'm only TRULY gluten-free 2 months. I started Nov. 1 but kept getting glutened accidentally on the holidays--I visited my sister's house and brought my own veggies and gluten-free bread BUT she made two turkeys. One for me and one for everyone else. Sweet, right? Yes, but she BASTED both turkeys with the same baster, so her STUFFED turkey juices were being splashed all over my "virgin" gluten-free turkey the entire time and I had no idea...SIGH :blink: She meant well, but you bet I was sick the next day. Another time, she kindly made me a gluten-free birthday cake from a gluten-free mix (so proud of herself)...but used cooking spray with wheat starch in it... DOH! :huh: Meanwhile, I kept coming home from these family visits and wondering why I was sick. Did it piss me off?? yeah, but I jumped right back on the horse.

I guess I am trying to tell you it is sometimes a bumpy ride, but here's the thing...

AND here's the positive side you are looking for!

---I FEEL BETTER... FINALLY after 2 months completely gluten-free. Not 100% "cured", and I have a million symptoms to clear up, but I am not space cadet head and not in the bathroom all day, and not EXHAUSTED, not bumping into walls with gluten poisoning, not searching for words because I couldn't think, or rereading everything five times so I could understand what the heck I was reading (I actually gave up reading I got so upset about that) and NOT crying from the burning pain in my gut and throat and chest 24/7. I was sick for many years feeling like that! (You cannot imagine how bad things were and I'll spare you the details.)That's not why I am telling you all this anyway....I am telling you the UP SIDE OF STICKING WITH gluten-free LIVING!!

I am slowly seeing positive results and YOU WILL TOO!

Zack, just a few months ago, I had lost so much weight, I was skeletal and in debilitating chronic pain and lost muscle mass and weakness and feeling so lost, thinking death would be easier but I would not give in...and IN JUST TWO MONTHS...my nightmare... is REVERSING!!

It will come to you, too!

Never give up.

I kept finding hidden gluten everywhere. My husband and I scoured the house. Dumped everything/changed cutting boards/ and finally, he went gluten-free with me because he felt it was best. (I know, he's awesome! :P )

The brain fog thing?? I had it so bad for 2 years, I was scared I was losing my mind. HOWEVER....I noticed the fog "lifting" about week 5..and it is getting better every day. Does that makes you feel better?? Hope so!!

Don't give up and don't despair!! Try to RELAX and know you are eliminating gluten as best you can. It's a long road, but each day, you are closer to feeling better and it beats the heck out of staying lost in space and feeling like crap, don't you think?? :)

You can do this!!...Hang tough!! B)

zebaldwin Explorer

Thanks so much IrishHeart, I really appreciate all that!

The hardest part for me is that I don't have a lot of stomach issues, and with so many people here having them, it's hard to keep convincing myself.

On a slightly different note, I have been talking to a few people, and I am going to try and take a pro-biotic. Reading testimonies and reviews, I have seen MANY people describing EXACTLY how I feel...so that is very positive.

Right now I am continuing gluten free. I decided to eat some cheese and maybe soy, but once I get the pro-biotics I a going to go all natural. (veggies and meat, etc) and see how that goes for a few weeks...

So ya, that is the plan right now. I hate getting my hopes up again, but it's worth a shot. I'm doing what I can.

Thanks again for the info.

IrishHeart Veteran

Thanks so much IrishHeart, I really appreciate all that!

The hardest part for me is that I don't have a lot of stomach issues, and with so many people here having them, it's hard to keep convincing myself.

On a slightly different note, I have been talking to a few people, and I am going to try and take a pro-biotic. Reading testimonies and reviews, I have seen MANY people describing EXACTLY how I feel...so that is very positive.

Right now I am continuing gluten free. I decided to eat some cheese and maybe soy, but once I get the pro-biotics I a going to go all natural. (veggies and meat, etc) and see how that goes for a few weeks...

So ya, that is the plan right now. I hate getting my hopes up again, but it's worth a shot. I'm doing what I can.

Thanks again for the info.

You're welcome. Probiotics are always a good idea. Simple pure foods work best. Good luck!

I hate to say this, because I know you probably don't want to hear this (and I don't blame you one bit!) but if you read about celiac, you will see that a LARGE number of people never experience stomach or bowel issues. (My cousin didn't but she has it) That's why this thing is so darn tricky. The major issues are fatigue, brain fog, neurological issues and muscle weakness. So many of the people on here never had a stomach problem, just felt spacey in the head, felt like they were mentally ill, depressed or anxious or slept all day long. But once examined, they were celiacs for sure.

I wish you well!!Take care!!

zebaldwin Explorer

Irishheart,

Well, those are my exact symptoms! Which is why I'm here :)

Just that it's coming up on 2 weeks of gluten free with the same brain fog, weakness, fatigue, and headaches/migraines :( Maybe once I go "all natural" paired with pro-biotics I'll start to see some progress. I am also seeing a new neurologist in 2 weeks, and I am going to run everything past him.

Once again, thanks!

ps. I have started eating yogurt (for the live cultures) and I think it is actually helping a little bit...Is that something I should drop since it's dairy and sugar? :/

ravenwoodglass Mentor

Irishheart,

Well, those are my exact symptoms! Which is why I'm here :)

Just that it's coming up on 2 weeks of gluten free with the same brain fog, weakness, fatigue, and headaches/migraines :( Maybe once I go "all natural" paired with pro-biotics I'll start to see some progress. I am also seeing a new neurologist in 2 weeks, and I am going to run everything past him.

Once again, thanks!

ps. I have started eating yogurt (for the live cultures) and I think it is actually helping a little bit...Is that something I should drop since it's dairy and sugar? :/

If you seem to be tolerating the yogurt okay then you could stay with it. Just make sure it is gluten free. You could go with a plain yogurt if you want to avoid the sugars.

It sounds like many of your symptoms are neuro related and those can take some time to resolve. I found sublingual B12 to be helpful. I do think you are wise to go with more 'all natural' ie. unprocessed food.

zebaldwin Explorer

Ravenwood, I dont know if the yogurt is bothering me since I haven't really seen any improvement...

should I hold off on the threelac..and just start the more basic diet...I just don't know if I'm jumping the gun with the whole pro-biotic thing...I appreciate your help.

IrishHeart Veteran

Try not to throw too many things into your system. Stick with a plain, whole foods diet and a probiotic for now. (not the threelac -- I am leery of such things--JMHO) I agree with Raven--take sublingual B-12.

I know you are discouraged, but two weeks is still early. Sorry, but no one on here has had these neuro type symptoms resolve that quickly. It's a bummer, I know.

Try to relax. Stress exacerbates everything. I know this too.... :huh:

mushroom Proficient

Why hold off on the Threelac? Most of us on here have used probiotics (many of us still do) and they are certainly not going to do you any harm. :)

ravenwoodglass Mentor

Ravenwood, I dont know if the yogurt is bothering me since I haven't really seen any improvement...

should I hold off on the threelac..and just start the more basic diet...I just don't know if I'm jumping the gun with the whole pro-biotic thing...I appreciate your help.

Just my opinion but the more basic unprocessed diet would be my first step.

zebaldwin Explorer

I dont know,

After I bought it I've heard bad things from a few people...like it causes cancer and stuff. I don't know. Just upset that on top of anything I might have just wasted $60 I don't have :(

Why hold off on the Threelac? Most of us on here have used probiotics (many of us still do) and they are certainly not going to do you any harm. :)

mushroom Proficient

I don't think there are many things that haven't been found to promote some kind of cancer in somebody :rolleyes: Seriously though, what is your evidence on this?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Idnam replied to cristiana's topic in Related Issues & Disorders
      24

      Ectopic heartbeats - any relation to digestive issues?

    2. - Russ H replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      False tTG3 Test?

    3. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      20

      Does anyone here also have Afib

    4. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      20

      Does anyone here also have Afib

    5. - SB04 replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      False tTG3 Test?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,716
    • Most Online (within 30 mins)
      7,748

    AnnaBananza
    Newest Member
    AnnaBananza
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Idnam
      I've just had 24 hr ECG monitoring but I am convinced the problem with my heart arythma  is due to Histamine intolerance. I was making and loving L reuteri yogurt, supposed to get rid of sibo, I was also having, on a daily basis, kefir, sauerkraut and loads of spinach plus Avacado. Bananas and cheese have long  been off my list of safe foods as I was having a sort of allergic reaction after eating them and my accupuncturist said I had a heart arrythma.  After the yogurt fest mentioned above, I had a racing heart rate and think I must have had far too many Histamine producing foods. Apparently celiacs have too much histamine in their system anyway and I was, on a daily basis, eating very high histamine foods. I have cut them out of my diet and now eat only low histamine foods and I take quercin so the heart rate has slowed and the thudding I was getting at 4am has gone so I think I am right. The only symptom I  had for celiac disease (3yrs since diagnosed)  was acid reflux and the only thing that stopped the chest pain it gave me was the PPi Rinitidine  an H2 antagonist, to reduce stomach acid, (which high histamine causes) because it nuetralised the histamine!!  I told my doctor this and  he agreed with me and was delightfully shocked by my research,  (btw what would we celiacs do without google?) so I took a Famotadine, amore up to date H2 ppi for a couple of nights and then reduced my histamine intake, now awaiting results re the  ECG..............I seem to have lost my ability to spell, sorry...............      
    • Russ H
      The problem with a a multiple screening test like this is that it is likely to generate at least one result that is outside the normal range in a healthy person leading to futile investigations. The pathogenesis of dermatitis herpetiformis makes it unlikely that someone would have raised IgA-tTG3 but not raised IgA-tTG2. Suspected dermatitis herpetiformis should be referred to a specialist for diagnosis. dermatitis herpetiformis causes a specific rash and symptoms - not merely hives. https://bestpractice.bmj.com/topics/en-gb/3000326
    • knitty kitty
      @Yaya, Vitamin supplements should be stopped eight to twelve weeks before testing blood levels.  If vitamin supplements are not stopped, the tests will reflect the vitamins in circulation in the blood stream from the supplements, and blood levels may appear within "normal" limits.  Blood tests do not reflect the amount of vitamins stored inside cells where the vitamins are actually utilized.  There can be "normal" levels in the blood, but organs and tissues may be depleted.  The brain sends messages to  tissues and organs to give up their stored vitamins so that the brain and heart don't run out.  That "excellent metabolism" is fueled by Thiamine and the other B vitamins.  Do read the articles above.   Dr. Lonsdale and Dr. Marrs' research changed my life.  Taking high dose thiamine (thiamine hydrochloride, Benfotiamine and TTFD (tetrahydrofurfuryl disulfide)) really improved my health in an impressive way.  Thiamine is water soluble and nontoxic.  Thiamine is safe in high doses.  If not needed, it's easily excreted.  If needed, the improvement will become apparent in a very short time.  No harm, no foul.  
    • Yaya
      Yes, I had COVID for 10 days thought I recovered like EV1 else, but suddenly had A-fib, hospitalized for 3 days, and now taking Flecainide 2X daily.  Long C also ruined my once excellent metabolism.  I do take B 50, and my bloodwork is always very good.   
    • SB04
      Thanks! I don't think it was a total IGA test, it was called "Array 3X - Wheat/Gluten Proteome Reactivity & Autoimmunity" and it tested a bunch of wheat proteins and transglutaminase for both IgG and IGAs.  
×
×
  • Create New...