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

Gluten Free And Loving It.

CRashster

By CRashster
in Coping with Celiac Disease

Recommended Posts

CRashster Newbie
CRashster
Posted

I'm CRash, I'm 46, male and live in Tennessee. I've suffered from hives of unknown origin for 10 years. They are/were getting worse and worse. I suffered depression and started getting iritis. I've had no energy and crawled into bed as much as I could. Been to allergy doctors at Vanderbilt and all they seem to do is increase my meds. They did a scratch test and no food allergies showed up. 4 Zyrtec a day is too much for me. I tried quitting dairy, meat, caffeine, nothing seemed to work. One day I started thinking about gluten. I didn't really know what it was, or how to quit. I overheard an old acquaintance telling someone he had gone gluten free. When I had a chance I went over and spoke with him. Basically, he told me how gluten affected him and how he went gluten free. Last weekend, I took the plunge. I quit gluten. I tried to quit 100%, but kept finding hidden gluten. It was in a probiotic I was taking. Other places, here and there. Last Thursday, the hives stopped. Yesterday, I stopped all my meds, no Allegra, no Doxepin. It was scary. I've kept Zyrtec and an Epipen close at hand. But, so far, so good. No hives. Better energy. My mind is unfogging. A swelling sensation here and there, but nothing ever shows up. My eyes are clear. I'm basically living on Chex, Scoops and ground beef on corn tortillas. But that's alright with me. In time, I'll try other things. I hope to be a gluten free success story. I hope to have some sort of life back.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Looks like you might have had an allergy to it :) By all means stay that way.

rosetapper23 Explorer
rosetapper23
Posted

Welcome, CRash! Your story is one that is told here on a daily basis. Isn't it wonderful to finally know "the answer"? It sounds as though you're on the road to recovery and will have your life back shortly. What great news!!

You'll find that eating natural foods, rather than gluten-free substitutes, will help you heal faster and allow for less gluten cross-contamination. Because your rash may have been Dermatitis Herpetiformis (the skin disease associated with celiac disease) rather than an allergic rash, you might consider eliminating iodine from your diet for a while, too. For the rash to erupt for many of us who suffer from DH, we need to ingest both gluten and iodine.

If you like to barbecue, be sure to really clean your grill beforehand to get all remnants of barbecue sauce and bread off of it. Meat is a good food to eat, as are vegetables, fruits, nuts, eggs, beans, rice, potatoes, and dairy (if you're able to eat dairy). If you like soy sauce, wheat-free Tamari sauce is a good substitute. When it comes to medications, you can check them for gluten-free status at www.glutenfreedrugs.com . If, however, you don't see the drug listed there, you'll need to call the lab directly because they don't have to list gluten if it's used as a filler.

As for gluten-free breads, I can personally recommend Against the Grain Gourmet baguettes, Rudi's, and Udi's. They're usually found in the frozen-food sections of upscale supermarkets like Whole Foods. Remember, though, you need to use a toaster that has never toasted gluten-containing bread. One of the best gluten-free pastas is made by Tinkiyada, and there are gluten-free lasagna noodles sold by several companies. As for crackers, I like Crunchmaster best, and you can find them in the regular cracker aisle at most supermarkets. Glutino makes a good line of Ritz'like gluten-free crackers, but they're sold on the gluten-free aisle. Also, Cocoa Pebbles, Fruity Pebbles (not the ones with the marshmallows, though), and specially marked boxes of Rice Krispies are also gluten free. See's Candies are all gluten free except for the fancy flower frosting on the Easter eggs.

Good luck with your "new" life!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I hope that keeping gluten out of your diet is the answer for you! You've suffered symptoms for quite a long time. It must be wonderful to finally be getting some relief?

Get a new toothbrush and only use pans that don't have a scratched non-stick coating. Get new wooden spoons for stirring things if you use them when cooking.

Gluten is hidden in a lot of things, so you'll have to read a lot of labels. Check your shampoo and whatever soaps, toothpaste, etc. that you use. I was surprised to see that my favorite shampoo had wheat as two of the ingredients!

If you stick to a strict diet you should see other symptoms that you didn't know you had..go away over time as well. :D

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Ive found dairy and iodine to be triggers for my skin. Congrats on solving the mystery!! Welcome! This forum has been SO helpful.

Don't forget your veggies and fruits :)

T.H. Community Regular
T.H.
Posted

Oh congrats! Here's hoping that you are a success story as well!

It's shocking to have this sort of thing just up and go away from one, little ingredient change, isn't it? Shocking but really, really great. :-D

zimmer Rookie
zimmer
Posted

Glad you're feeling better! I'm in TN, too. FYI - found a GI, Dr. Christopher Lind, at Vandy. He is very knowledgable and easy to talk to and has also been a speaker for the local support group.

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Sounds like you may be allergic to wheat. I get hives from lotions and other personal care products with wheat in them. My scratch test did not show up any food allergies either but my IgE allergy blood test showed a wheat allergy. I also have other symptoms that indicate I have trouble with other forms of gltuen too (barely, malt, rye, etc) so I stay away from ALL gltuen not just wheat. My allergist said the blood tests and scratch allergy tests are not perfect and just because you don't show anything doesn't mean you can't be allergic. I am allergic to milk now to the point where my throat closes shut and i have to carry an epipen. However my allergy tests for milk ALL came back as negative. My allergist said to avoid it anyway and not to risk my life just because the test was negative.

CRashster Newbie
CRashster
Posted
  • Author

Ok, today, not so great. Had a hive on my back last night, went away this morning, and now two very small ones on my head. Also, a bit of depression this morning. Is this some sort of gluten working through my system, since it's only been like ten days, or am I on the wrong track? We ate dinner at a restaurant last night and although what I had was supposedly gluten free, I have my doubts. I had to explain to the waitress what gluten is. Energy was decent today, not as good as yesterday, but not as bad as usual. Also, thanks everyone for the comments and good tips.

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.