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

Sheesh, Why Am I Still Having Problems?


HappyCat22

Recommended Posts

brehm48 Newbie

DO NOT USE wheat flour, wholemeal flour, oatmeal, rye flour, strong flour, semolina, barley flour, self raising flour, spelt flour, triticale, couscous.

DO NOT USE products made from these flours such as semolina.

DO NOT USE pastas such as spaghetti, macaroni, lasagne.

DO NOT USE products that are just labelled starch, food starch, edible starch or modified starch.

BEWARE of any products that may use starch as a filler such as mustard powder and white pepper.

BEWARE of any products that contain unspecified sweeteners and stabilisers. These may be chemically modified wheat flour.

I found this web site for you if you go into it you will find a list of a lot foods that are gluten free, just enter the site and click on food list on the upper left hand. Then you just select by the category

Open Original Shared Link

Forbidden List

For you with chronic complaints.........

Wheat, Abyssinian (Triticum duran), Einkorn Wheat

Alcohol (Spirits - Specific Types)

Artificial Color

Artificial Flavor

Baking Powder

Barley Grass (Barley Hordeum vulgare)

Barley Malt

Beer

Bleached Flour

Blue Cheese (made with bread)

Brand

Bread Flour

Brewer's Yeast

Brown Flour

Bulgar (bulgar wheat)

Calcium Caseinate (contains MSG)

Caramel Color

Cereal Binding

Chiton

Citric Acid

Coloring

Couscous

Dextrins

Edible Stach

Farina Graham

Filler

Flavoring

Food Starrch

Fu (dried wheat gluten)

Germ

Glutamate (free)

Graham Flour

Gravy Cubes

Groats (barley, whaet)

Ground Spices

Gum Base

Hard Wheat

Hydrolyzed Plant Protein (HPP)

Hydrolyzed Vegetable Protein (HVP)

Inulin

Kamut (Pasta Wheat)

Malt, Malt Extract, Malt Syrup, Malt Flavoring, Malt Vinegar

Miso

Matzo Semolina

Modified Food Starch

Modified Starch

Mono and Diglycerides

MSG

Mustard Powder

Natural Flavoring

Pasta

Pearl Barley

Rice Malt (contains koji)

Rye

Seitan

Semolina (Triticum)

Shoyu (soy sauce)

Spelt

Soba Noodles

Sodium Caseinate (contains MSG)

Spirits (specific types)

Sprouted wheat or barley

Starch

Stock Cubes

Suet in Packets

Tabbouleh

Teriyake Sauce

Textured Vegetable Protein (TVP)

Triticale

Udon noodles

Vegetable Starch

Vinegars (Specific types)

Vitamins

Wheat of any kind

Wheat starch

Wheat Grass

Open Original Shared Link

You must check out this web site I just found it is very insightful.

Here is a quote from it:

"Restaurant Reality

Restaurants are out of my reality now. That was a tough one to give up, because I had grown weary of cooking and had been eating out for a couple of years. Most of the Celiac groups will tell you to ask at a restaurant and take care of yourself that way, but how is that possible when my toast can't touch the toaster where the wheat toast was prepared? So what if I have grilled ahi tuna with no spices, if gluten was on the grill right before my food, then the gluten will rub off on my tuna."

If you just do a search on the net you can really find a lot of info, I hope this helps.


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



Celiac.com Sponsor (A8-M):



shift1313 Newbie

Hello everyone, my name is matt, this is my first post here, im 23 and have been gluten free since feb. I was given a tip by a friend of a friend whos son has been gluten free for 6 years(i think hes 10) she said with every thing he drinks they add glutamine, you can find it at gnc or similar stores. its an amino acid suppliment that im told will help repair the intestinal lining. I have only been using it for a short time so I dont have any success story but my friends son after 3 years of being on it and a very strict diet had his intestines checked with no signs of damage!!!! Years before they were in horrible shape. Im not sure if anyone else here has used it but it is giving me hope. Ive been feeling horrible for about 3 years now so ill try anything to get back to my old self. :D

celiac3270 Collaborator

Welcome to the board, Matt! I would think, though, that after three years, one's intestines would be healed regardless of whether they drank this....especially, obviously, with a strictly gluten-free diet. The intestines start to heal within days of going gluten-free..........but just sort of on the surface.....eventually they heal completely, but it shouldn't take more than three years, anyway, I would think.

brehm48 Newbie

:rolleyes: Welcome Matt!

I'm a newbie to. I just wanted to tell you to keep up the good work of staying on your diet. Your gonna love this forum everybody here is really nice and has a lot of helpful information. I just joined a couple of days ago and I'm hooked. Thanks everybody

shift1313 Newbie

thanks for the welcomes. Im doing everything I can to stay gluten-free because i have really bad reactions. Also my wife is gluten intolerant so it makes things a bit easier. I just found that my local grocery store carries some gluten-free products like gluten free pantry mixes for 2.50, the health food store chargers $5!!. It makes it a bit easier.

coin-op Newbie

to answer the first post:

your diet is probably too complex, you have no idea what is causing the problems. Simplify it a bit so you can more closely track your cause and effects. Start cutting out things. I suggest keeping to simple foods like fruits and vegetables and whole grains - for you maybe just rice and corn. Start reading ingredients on EVERYTHING. You will be surprised at what you cannot eat.

-cass

Judithg Rookie
I am really concerned about the bacterial overgrowth too. I'm taking probiotics and it helps me somehow. Interestingly, I had to go on antibiotics last year, and my symptoms almost disappeared during that course. I wonder: has anyone of you had the same experience with antibiotics?

I just read this post about bacterial overgrowth and antibiotics. I had the same experience 3 times in the past year where my symptoms lessened or disappeared while on antibiotics (of course, I was not eating gluten before, during, or after the antibiotics--bad GI symptoms had developed despite my best efforts at avoiding gluten over the past few years). My GI doc has not been able to explain it. My alternative doc believes I have had an ongoing problem with bacterial overgrowth which has contributed to my various symptoms.


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



Celiac.com Sponsor (A8-M):



strack2004 Rookie

I usually have experienced an improvement in my symptoms while taking antibiotics off and on over the years. It only lasts a couple of days after the course is finished, though. Probiotics over a long period of time may be the answer. I just discovered a new book at our library called "Sugars That Heal" by Emil I. Mondoa, M.D. and Mindy Kitei. It lists 8 sources of essential saccharides. Many of them are found in brns, aloe vera, shiitake and maitake mushrooms, . Much interesting information relating these substances to various disease conditions. Strack2004, Ruth S.

Mark Newbie

Yes, my improvement lasted about a week after my course was finished, and then it got even worse than before. It seems the bad bacteria can repopulate the place much faster than the good ones.

I'm just trying a few different probiotics to see which one works better for me. Up to now, they seem to calm down my irritated intestines.

Thank you for sharing your experience.

MARK

gluten-free/CF since September 03

strack2004 Rookie

Mark, Which probiotics do you use? CurrentlyI am using something called Procratin which contains protease, amylase, lipsase and one other enzyme. I do this at the library and don't have the bottle handy. Ruth S.

CoolCat1 Rookie

Canadian Karen, I had the gastroscopy, colonoscopy etc a couple of months ago and got diagnosed with celiac disease. The demoral they give you made me so relaxed. It's a fantastic drug. Don't worry. I love Demoral.

kschmitz Newbie

Hi,

I am also new to this forum and appreciate all your experienced advice. RE: eating out - a dietician I contacted suggested taking aluminum foil to resturants and asking the chef to grill meat/fish on the foil. Has anyone tried this?

ks

Mark Newbie

Ruth, the Procratin doesn't probably contain any living cells, but definitely can help you with insufficient pancreas. I've tried 5 Strain Dophilus from Swiss Herbal Remedies recently, and now I'm on Lepicol - funny stuff, looks more like a hay, but there is a lot of fiber in it which helps you to get some regularity into your digestion. I've just started, but it seems to work well.

MARK

gluten-free/CF since September 03

Canadian Karen Community Regular

Hi Cool Cat!

Thanks for the reassurance that Demoral will do the job, I am not looking forward to the colonoscopy in regards to the "discomfort", but I am anxious to get it over with to get some results...... I have it on September 28th......

Have a great day!

Karen

strack2004 Rookie

Mark, Where do you get the 5 strain dophilus or lepicol? Will check my health food store to see if the lady there carries either one. Thanks, Ruth

cojaro Newbie

check everything

i have my own toaster and pans and butter plate

and i make sure none of those come in contact with something that isnt gluten-free-free

its a bit troublesome, but its better than feeling sick all the time

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. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,926
    • Most Online (within 30 mins)
      7,748

    fr0gger03
    Newest Member
    fr0gger03
    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

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.