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

Going Crazy - Help Me Find The Gluten

tsomo

By tsomo
in Coping with Celiac Disease

Recommended Posts

tsomo Rookie
tsomo
Posted

I need help. Due to several contaminations this summer I am on a strict diet, but I am still getting gluten! I developed a bad dermatitis herpetiformis rash two days ago and I can't see where the gluten is coming from?

This is the totality of what I eat -

Pinto beans, ground beef, dried chillies and corn tortillas made from Maseca (ground corn), Tillamook orange cheddar cheese, starbucks coffee I brew at home and white wine.

The seasoning I use is McCormicks oregano, garlic powder, pepper and of course salt.

I use wesson corn oil for cooking. And I eat some fruit and vegetables. And there is no gluten food in my house whatsoever!

I'm also taking Claritin-D for my allergies.

I use Crest toothpaste. Palmolive dish soap.

A week prior to this contamination I eliminated the cheese and the garlic powder. I seemed to be doing better. Then I ate the cheese and garlic powder again and bam! Another contamination. (I know, I should have only introduced one at a time).

What do you think? Is it the spices or cheese? Or something else Im eating?

I want to phone McCormick but I know what they'll say, "theres no gluten in our spices". Tillamook will say the same thing I'm sure. Could it be the "annatto colour" in the cheese?

Your input is appreciated,

I'm really frustrated because I cook everything from scratch - no processed foods. There is no gluten in my house and everything I eat is purportedly "gluten free"! (none of my cookware has be used for gluten)

"I feel like I'm taking CRAZY pills!" (zoolander)

Tsomo

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

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

Could the tortillas be contaminated by the mfr. using the same line for flour tortillas? Maybe you could try making your own for a week or so & see if it helps.

Or could it be you have a casein sensitivity? I don't know if that could affect DH though.

Annato color should be gluten-free.

CarlaB Enthusiast
CarlaB
Posted

What about shampoo, conditioner, body lotions, lipstick, etc.?

lovegrov Collaborator
lovegrov
Posted

Is that your dog in the photo? If so, does the dog food have gluten?

I don't see any iodine in what you eat but iodine can aggravate DH until it's completely gone. Corn tortillas or the flour they're made with might be a problem.

richard

lindalee Enthusiast
lindalee
Posted

I used to have a bad rash on my stomach area that has gone away- don't know if it was elimination of foods or oil of oregano but the only cheese I eat is white- cream,cottage,yogurt,-have a small amount of rash on my hairline area near the back of my neck. Since I trim my hair anyway, I just trimmed that area with my razor to see if that helps. Epson salt soaks helped my rash also. I think I have a reaction to corn. I sneak it in sometimes and have a reaction everytime. I would probably eliminate the items you are unsure about and see what happens. I'm still trying to find my culprit. Wish I knew what to tell you. :blink:

gabby Enthusiast
gabby
Posted

I personally have had lots of trouble with garlic powder and garlic salt, but don't know anything about McCormicks. It might be a good idea to contact the manufacturer and ask them if the garlic powder is gluten-free (or if it is processed in a facility that processes gluten containing foods).

Can't hurt.

Hope this helps and you are feeling better soon.

tsomo Rookie
tsomo
Posted
  • Author

Queenofhearts - I dont eat manufactured tortillas, I make them myself from Maseca (ground corn) and water.

Carla - good question, I dont put anything on my lips. I dont use lotions. And I use Garnier Fructose shampoo and conditioner which, last time I checked about 1 year ago, was gluten free.

Richard - yes the dry dog food has gluten but my husband feeds them and I never do. Unless of course tiny fragments waft through the air??? Is that possible? I dont know. I could move the food outside and see if that makes a difference.

Tsomo

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

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

Hmmm... do you by any chance kiss your dog? I know you can get glutened from a person that way!

CarlaB Enthusiast
CarlaB
Posted

I'd test the cheese and garlic powder again. You mentioned that you were better when you weren't eating those, then worse when you added them back.

I use that already minced garlic they sell in the produce dept. and have had no problems with it.

penguin Community Regular
penguin
Posted

I'd guess the dog food. Even if you don't feed the dog, watch him eat one day. There are probably crumbs in his muzzle, on his paws, if he licks you, etc.

McCormick spices are gluten-free, and they clearly label gluten as well.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had a lot of mystery glutenings off and on that I couldn't figure out. I switched my animals to totally grain free food (IVO) and have not had a glutening since that I couldn't figure out. You may want to see if you can find a grain free food and see if that makes a difference.

Turtle Enthusiast
Turtle
Posted

Unbelievable!! I never thought to think about the darn dog food!!! :o

When will this ever end???? :rolleyes:

Thanks for the insight!

Lollie Enthusiast
Lollie
Posted

I find that when I eat dried spices of any kind, I get sick.... I stick to fresh, especially garlic. I just like it better now. I agree with the everybody else....probably the dog food!

I hope you are able to resolve this! But definantly, your not crazy!!!!!

Lollie

lovegrov Collaborator
lovegrov
Posted

I wouldn't worry about gluten wafting through the air, but the dog could still be getting on you through its mouth.

Do you ground the corn yourself or is it ground in a mill where XC can happen?

richard

roger Newbie
roger
Posted

Corn absolutely kills me, moreso it seems than wheat; maybe it's because it's in everything as a sweetner these days. Does soy bother you? If so, the garlic powder can be a source.

oceangirl Collaborator
oceangirl
Posted
Corn absolutely kills me, moreso it seems than wheat; maybe it's because it's in everything as a sweetner these days. Does soy bother you? If so, the garlic powder can be a source.

I've been wondering about pet food. I have 5 cats, 2 dogs I always feed and wonder about mysterious "glutenings" ALL THE TIME!!! (I haven't made it a week yet without getting a reaction to something- the house is now gluten-free except the pet food) Anyone have help with WHERE to look for grain-free petfood? I hope you find the answers soon- I really KNOW how frustrating it is to NOT FIND THE CULPRIT!!! Good luck!

lisa

tsomo Rookie
tsomo
Posted
  • Author
I wouldn't worry about gluten wafting through the air, but the dog could still be getting on you through its mouth.

Do you ground the corn yourself or is it ground in a mill where XC can happen?

richard

I didn't think it would waft through the air either, and I dont kiss my dogs or let them lick me at all. I dont go near them after they eat either. So I dont think its the dog food. I think I am ingesting the gluten in my diet. (my DH has gotten worse day by day and I need more than ever to get to the bottom of this because of sleepless nights).

I'm going to investigate the ground corn today. The brand name is Maseca and it contains ground corn and lime. Im going to write to them, as there is no email or phone number, and try and get some answers about their manufacturing plant.

Tsomo

penguin Community Regular
penguin
Posted

Maseca is gluten-free and I've used it with no problems at all.

Please don't take offense to this, but is your DH biopsy diagnosed? Is there anything else it could possibly be? Are you taking dapsone?

CarlaB Enthusiast
CarlaB
Posted

No one has brough up hubby ... is hubby gluten-free when you kiss him?

tsomo Rookie
tsomo
Posted
  • Author
Maseca is gluten-free and I've used it with no problems at all.

Please don't take offense to this, but is your DH biopsy diagnosed? Is there anything else it could possibly be? Are you taking dapsone?

No, I haven't had a biopsy but Im considering it. Its DH though, there can be no doubt about that. I get it after I ingest gluten, intensely itching, burning rash that ....anyways, you have to have it to know it.

I dont just get DH though, I have the whole gastro thing too and I can also tell by my stool when Ive ingested gluten. However, at this time, it is the DH that is the most difficult to deal with due to the intense intchiness of it. It starts out as little pustules that errupt and its extremely itchy. Then the itchiness turns to an intense burning feeling. It occurs on both sides of my body...its textbook DH. (I really hate having to explain it though...if you had it you would know it). Im not here to prove that I have DH if you have doubts that is your issue. (dont take offense, just if you had it you would know it). People who ask - 'is this DH' dont have it, because its really not like any other rash on the planet, and the fact that it comes out after eating gluten is like ...DUH. Its not rocket science people! Why do some people harp on "official" diagnosis? When we all know that the majority of doctors cant even diagnose celiac disease or DH. I have been to many doctors during my life and did anyone diagnose me?? Yet now Im suppose to prove to whoever that I have been suffering from 'x' symptoms. Dont you realize you are doing the same thing that ignorant doctors do. Instead of you educating yourself, and knowing the diseases, you acuse other people of being ignorant about their own condition! And as for dapsone, its a drug okay, the only thing that is going to get rid of DH is the absense of gluten! Its not rocket science people! Only an idiot takes a drug, or prescribes a drug for something whos remedy is the elimination of a substance. Sure, you can take a drug to emmeliorate the symptoms, but its an illusion if you think its helping you.

You should know how irritable and crazy a glutenate person is, and dont you think its not frustrating for everyone? You obviously dont have DH and thats great, but do you appreciate it when someone says to you - 'oh, are you SURE you have celiac disease?'

No offense either, but you did irritate me with that question and I know this post will be offensive so whats the point in saying 'no offense'? If you have to say to someone 'no offense' then you know your post is offensive!

Im posting to this board because im frustrated that I haven't been able to find the gluten source! Ive had many sleepless nights due to a very uncomfortable rash not to mention the irritability and constipation and bloating and everything else that comes along with gluten. Then to be questioned by someone on this board about an 'official' diagnosis is enough to make a person upset. If I did decide to get biopsies and make myself as sick as a dog for months, for an 'official' diagnosis, it would only be to shut up annoying people like you who always ask 'did you get that officially diagnosed?'.

Im sorry to post this vehemence but sometimes you just have to tell people exactly what you think. If anyone else is insensitive I claim the right to be insensitive right back!

penguin Community Regular
penguin
Posted
No, I haven't had a biopsy but Im considering it. Its DH though, there can be no doubt about that. I get it after I ingest gluten, intensely itching, burning rash that ....anyways, you have to have it to know it.

I dont just get DH though, I have the whole gastro thing too and I can also tell by my stool when Ive ingested gluten. However, at this time, it is the DH that is the most difficult to deal with due to the intense intchiness of it. It starts out as little pustules that errupt and its extremely itchy. Then the itchiness turns to an intense burning feeling. It occurs on both sides of my body...its textbook DH. (I really hate having to explain it though...if you had it you would know it). Im not here to prove that I have DH if you have doubts that is your issue. (dont take offense, just if you had it you would know it). People who ask - 'is this DH' dont have it, because its really not like any other rash on the planet, and the fact that it comes out after eating gluten is like ...DUH. Its not rocket science people! Why do some people harp on "official" diagnosis? When we all know that the majority of doctors cant even diagnose celiac disease or DH. I have been to many doctors during my life and did anyone diagnose me?? Yet now Im suppose to prove to whoever that I have been suffering from 'x' symptoms. Dont you realize you are doing the same thing that ignorant doctors do. Instead of you educating yourself, and knowing the diseases, you acuse other people of being ignorant about their own condition! And as for dapsone, its a drug okay, the only thing that is going to get rid of DH is the absense of gluten! Its not rocket science people! Only an idiot takes a drug, or prescribes a drug for something whos remedy is the elimination of a substance. Sure, you can take a drug to emmeliorate the symptoms, but its an illusion if you think its helping you.

You should know how irritable and crazy a glutenate person is, and dont you think its not frustrating for everyone? You obviously dont have DH and thats great, but do you appreciate it when someone says to you - 'oh, are you SURE you have celiac disease?'

No offense either, but you did irritate me with that question and I know this post will be offensive so whats the point in saying 'no offense'? If you have to say to someone 'no offense' then you know your post is offensive!

Im posting to this board because im frustrated that I haven't been able to find the gluten source! Ive had many sleepless nights due to a very uncomfortable rash not to mention the irritability and constipation and bloating and everything else that comes along with gluten. Then to be questioned by someone on this board about an 'official' diagnosis is enough to make a person upset. If I did decide to get biopsies and make myself as sick as a dog for months, for an 'official' diagnosis, it would only be to shut up annoying people like you who always ask 'did you get that officially diagnosed?'.

Im sorry to post this vehemence but sometimes you just have to tell people exactly what you think. If anyone else is insensitive I claim the right to be insensitive right back!

OK, listen lady, let me tell YOU what I think. I am trying to help and so is everyone else. Everything in your diet IS gluten-free, and you don't think it's the dog food making you sick. I was simply trying to see if there is ANYTHING else this rash could be on you, and you jump down my throat about it. I don't know you, I've never seen this rash you're talking about, and you think that I'm judging you. I also haven't read a post you've made where you have discussed this rash so how the hell am I supposed to know. I don't have DH, but I understand DH, thank you very much. I'm not judging you, I'm trying to help you.

I could really care less if anyone on here is formally diagnosed, if the diet makes you feel better regardless of your clinical presentation, then great. I have absolutely no question that you have celiac and a problem with gluten, and I don't know how you construed otherwise. I asked about Dapsone because it helps people, especially in the beginning of the diet, to heal and cope. I in no way think that people with DH shouldn't be gluten-free, or that they should be on Dapsone forever, and I take insult at you thinking so. I take insult to your whole post, actually, but that's beside the point. There was no reason for you to attack someone who was trying to get more information to help you. My mistake for trying.

I'm sick just like you so you should really back off. I didn't walk into a doctor and they immediately knew what was wrong, I've been sick a very long time and you should respect that, because I respect you and your illness. My bad for trying to help you get better.

CarlaB Enthusiast
CarlaB
Posted

I took the comment as penguin just trying to come up with alternatives ... I didn't think she was accusing you at all. It just makes sense that IF all the gluten was out of your diet, the DH would go away. She was coming up with a logical question.

I also think that this medium is very limited in its ability to show people's intent. I think if you two had been talking in person, this wouldn't have been a misunderstanding at all. Most of communication is body language, which we don't have the benefit of having here.

jerseyangel Proficient
jerseyangel
Posted

Yes, I believe that Penguin was trying to completey understand the situation so she could be of more help.

We're all in the same boat here--this is a safe place to come and ask questions, ask for help, vent, or anything else. It can be easier to misunderstand someone's intent when we only have the writen word to look at--not the person's face and tone of voice. :)

daffadilly Apprentice
daffadilly
Posted

Sorry you are having problems, I also think Penguin was just trying to help & I agree with Carla that when you do not have voice & body language, especially for us women, you miss a lot. But, I thought your outrage was very healthy & well written especially considering how terrible you must feel right now. I read it & got the picture of a suffering woman & know we would all hug you if we could!!!

One time someone very gluten-free knowledgeable on another board was getting glutened with the birdseed she was putting in her bird feeders. so I would not discount the dog food so quickly, & moving it outside might help some but the dogs are going to have it all over themselves & then someone touches the dog & then they open the refrigerator & then you come along & open the refrigerator & whammo you are itchy for sure.

there is grain free dog food out there, even people that have no clue about people celiac, know that their cat or dog cannot have gluten, I find that very well, amusing in a sick sort of way. The vets are taking better care of the animals than the docs are taking care of our children. There was a huge article in the Houston Chronicle on Sunday about a pet store that only carries frozen raw dog food - as in no grains. also some of you might be interested in reading the posts of DogtorJ , a very intelligent vet that also has celiac, you can google him & find the site.

heli Newbie
heli
Posted

Pet store chains sell Eucanuba which I used for my dogs before, well their gone now. Other brands are lamb & rice based. It's better for the dogs anyway. When a dog has a tummy ache they go outside and eat grass so they can throw up. So, why would a dog food company put wheat (grass) in the food? Convenience, but it is not good for dogs.

I got glutenized on a salad just by being in a pizza restaurant so, wafting through the air is a real possiblity.

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. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    5. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    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

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.