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

Omg! What Could It Be?!

Bravie

By Bravie
in Coping with Celiac Disease

Recommended Posts

Bravie Apprentice
Bravie
Posted

I've cut out dairy, soy, gluten, everything processed, I have my own pots, pans, knives, cooking utensiles, cutting board, sponges, rags, dish soap, can opener, I changed shampoos, I have my own storage area for dried foods, pots and pans, And I have my own little compartment in the fridge. I still feel bad! I eat nothing but meat and veggies, and I still get gas and a slight rash on my back. It isn't quite as bad as it used to be but...WHY AM I STILL HAVING SYMPTOMS AFTER ALL OF THIS HARD WORK?!

It's like i'm still being glutened by something...What is it? Water?! Could I be getting glutened by the family brita water filter? Gah! Idk...Maybe i'm going crazy... <_<

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted
I've cut out dairy, soy, gluten, everything processed, I have my own pots, pans, knives, cooking utensiles, cutting board, sponges, rags, dish soap, can opener, I changed shampoos, I have my own storage area for dried foods, pots and pans, And I have my own little compartment in the fridge. I still feel bad! I eat nothing but meat and veggies, and I still get gas and a slight rash on my back. It isn't quite as bad as it used to be but...WHY AM I STILL HAVING SYMPTOMS AFTER ALL OF THIS HARD WORK?!

It's like i'm still being glutened by something...What is it? Water?! Could I be getting glutened by the family brita water filter? Gah! Idk...Maybe i'm going crazy... <_<

It really could be you are allergic/sensitive to something(s) else. I had to go on a elimination diet and discovered I had quite a few things I shouldn't eat or shouldn't eat that frequently. For instance I am allergic/sensitive to all nuts plus sesame seeds, alcohol, carrots, tuna, lamb, carob plus probably a few extra things I can't think of right now. Sometimes the reason for this is leaky gut and sometimes its just pure allergies. Look to your family and/or ancestors, is that likely or what?

Another thing it could be is mercury poisoning or some other environmentally toxic exposure. But mostly you should try to pinpoint what it is or isn't.

Other than that maybe it is just taking its bloody time working out of your system. Again taking detox herbs could really help like dandelion or milk thistle etc. etc. plus saunas etc.

Do you get enough exercise, by the way? It too might help...

Bravie Apprentice
Bravie
Posted
  • Author

I take a 2 mile walk every couple of days. I have to, since I don't have a car atm. I'm gonna go to the doctors at the beginning of april to see what else is up. I know that too much salt can screw up my skin, so i eat little to none. I'm really skinny, always have been, but i've gained weight in the past couple of months, like 5 lbs or so.

My boyfriend thinks it's cuz i'm living in this house xD hehehehe That could be part of the problem :P

ravenwoodglass Mentor
ravenwoodglass
Posted

What detergent and fabric softener do you use? The rash may be linked to that. I have problems with rashes on my head and body when I use a lot of different products. I have learned the hard way to stick with Arm and Hammer dye free scent free detergent and fabric softner. Don't know if this is for sure the issue with you but thought it was worth mentioning.

YoloGx Rookie
YoloGx
Posted

What detergent and fabric softener do you use? The rash may be linked to that. I have problems with rashes on my head and body when I use a lot of different products. I have learned the hard way to stick with Arm and Hammer dye free scent free detergent and fabric softner. Don't know if this is for sure the issue with you but thought it was worth mentioning.

[/quote

That's a good tack. I too have problems with most detergents and even die in some clothing. Kind of forgot about it however. One has one's habits and after a while you don't even think about it. I use alternative less toxic scent free detergent from Trader Joe's in the green and white box... Several people in my family myself included can get rashes from strong detergents or soaps.

Bravie Apprentice
Bravie
Posted
  • Author

Yea, I think this rash has something to do with the detergent. The family uses ALL brand...My mom refuses to change it...So i'm gonna have to wait till I get out of here in less than 2 months. My boyfriend is extremely familiar and even follows a gluten/casein/soy free diet, just to maintain his diabetes and general health. I told him about the soap, detergent etc. I just can't wait to get out. I'm sick and tired of hearing my mom tell me that Celiac disease is some kind of curse when in reality it actually isn't hehe :rolleyes:

(My mom is an extreme religious fanatic who thinks that I was cursed by the devil with Celiac disease and that its my fault! hahahaha :lol: )

ravenwoodglass Mentor
ravenwoodglass
Posted
Yea, I think this rash has something to do with the detergent. The family uses ALL brand...My mom refuses to change it...So i'm gonna have to wait till I get out of here in less than 2 months. My boyfriend is extremely familiar and even follows a gluten/casein/soy free diet, just to maintain his diabetes and general health. I told him about the soap, detergent etc. I just can't wait to get out. I'm sick and tired of hearing my mom tell me that Celiac disease is some kind of curse when in reality it actually isn't hehe :rolleyes:

(My mom is an extreme religious fanatic who thinks that I was cursed by the devil with Celiac disease and that its my fault! hahahaha :lol: )

Just do your laundry yourself with your own detergent till you get your own place. Mom will be glad to have one less chore to do. You may soon be hearing from her how at least one good thing came out of it, you learned to do laundry. :)

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

Celiac.com Sponsor (A8-M):


oceangirl Collaborator
oceangirl
Posted

Bravie,

Keep a food log- it could help you pinpoint other problems. It seems like a big pain in the u-know-what but it's really second nature once you get used to it and it can really help figure things out. I've kept one for going on three years now and it has been indispensible.

I hope you feel better very soon! You will.

lisa

melmak5 Contributor
melmak5
Posted

I second the food log.

Its how I found out I couldn't tolerate any grains or raw fruits.

(I have been lucky and have been able to add some of them back in smaller quantities.)

mommida Enthusiast
mommida
Posted

Checking the laundry soap is a good line of thinking.

Check the fabric labels too!

I happen to be allergic to alpaca. Anything that had been washed with it was causing a reaction. (sneezing, watery eyes, itching, etc.) I even had a reaction to an alpaca sweater that had just been shipped to my house, still double wrapped in sealed plastic bags.

Keeping a food journal will help find other sensitivities.

I don't know how long you've been gluten free, but your gut needs to heal.

dksart Apprentice
dksart
Posted

After reading your other post, do you think your mom could be sabotaging you? She seems quite mentally unstable and maybe she's testing you (for whatever reason, maybe god told her to)by contaminating your food. I hate to say it, but she seems pretty loony.

susieg-1 Apprentice
susieg-1
Posted

i also have problems with DH rash. remember that stamps and envelope glue are no nos. I also have new dishwasher safe potholders if yours are cloth from your pre-celiac era they could be the culprit. I also have a gluten eating family and disinfect remote controls and telephone handsets regularly. the rash if it is DH could take 6 mos to a yr to dissapear it gets better so hang in there

ravenwoodglass Mentor
ravenwoodglass
Posted
After reading your other post, do you think your mom could be sabotaging you? She seems quite mentally unstable and maybe she's testing you (for whatever reason, maybe god told her to)by contaminating your food. I hate to say it, but she seems pretty loony.

I also agree that this is a strong possibility. Hopefully the time left in the situation will be brief.

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. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    2. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    3. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    4. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    5. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748
    KittyKatJill
    Newest Member
    KittyKatJill
    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

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.