gluten-free Survivor

Hi Nate, 

I smiled when I  saw your post because I thought I was the only  one that get the Celiac rash in those sensitive areas!

I had on my face, back and a minor break out on my belly.

Last month, I accidentally ate gluten and a painful rash broke out in my butt crack.(Could you believe that they put wheat in a pack of shelled walnuts? )

The other time, I try reintroducing rice/rice flour back into my gluten free diet and I got sick (constipation,  foulsmelling stool, body odor and some boils came out on my forehead)

I basically can't consumer any grains! 

I  used Castor oil and cortizone 10 (the castor oil at night before bed) on my rash and it dried up pretty quickly! 

I also bought a bottle of extra strenght glutenase enzyme capsules after that incident.

It's indeed a possibility that you can have celiac disease. I had some of those symptoms that you mentioned  (the pains in my joints and muscles were horrible ), to wake up feeling drained and a host of other symptoms. 

I would recommend that you get a Celiac disease full panel test done or do a Genetic test.

Do Genetic Testing to see if you have the genes for Celiac disease! It's  pretty spot on and not expensive.

If you don't have Celiac disease, you may be gluten intolerance! 

I wish you all the best and hope you feel better soon. 

It's a possibility that there was cross contamination somewhere.

Have you always eaten Corn because some Celiacs has problems with corn? I stay away from it!

There foods that have high lectin  levels like legumes and the ones that are mentioned above by the other person. It sounds like you get brain fog when you eat that stuff. Research the lectins in food and see if it's that or the corn causing you problems. 

Don't rejoice so fast.  One man's meat is another man's poison! 

Everyone's body reacts differently to certain things so tread carefully. 

I don't do soy, soy Lecitin, corn, high fructose corn syrup  etc.

If you are celiac,  look for organic foods that don't  contain alot of artificial preserves.

  On 4/26/2018 at 8:52 PM, kareng said:

You can't be diagnosed with Celiac just through genetic tests.  About 30% of people have at least one gene that could lead them to develop Celiac.  But only about 1% of people actually develop Celiac.

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"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the onset of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will. "

 

 

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Well I must be in thst 5% range group  because I have been having symptoms all of my life and even been misdiagnosed as having Sickle cell anemia!  Then when I  migrated here and did further testing,  no sickle cell. 

I did in depth research and listen various doctors on the matter.  It was said a genetic test can diagnose Celiac disease especially if you are symptomatic and there are 4 types of celiac disease  (No symptoms,  mild symptoms,  severe symptoms and I can't recall the other one)

I have spent alot of money behind doctors and I ain't doing that anymore. 

The only thing that I going to do is have a gastrointestinal doctor do an endoscopy a year from now to see how my small intestine villies are shaping up! 

  On 4/26/2018 at 4:58 AM, xopinkpetals said:

Hello, I am new to this forum, but not new to celiac disease.  I've had celiac my entire life, but I just found out I had it about 9 months ago.  I've had symptoms my entire life.  My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten).  My biggest problem is my stomach, I'm constantly having stomach pain/problems even though I eat gluten-free/gluten-free foods.  I suffer daily from celiac pain even though I eat gluten-free and it makes me depressed.  I've been eating gluten-free for 9 months now and I thought I would be done with this now.  I eat a lot of foods like soups and pastas and sometimes breads that are considered gluten-free (I always go for certified if I can find it) but I eat other things like chicken and veggies and fruits too.  I guess I thought my symptoms would be gone by now.  I've had bad reactions to gluten-free foods before and even my small intestine has hurt and I've had black diarrhea from eating said food so I'm always super careful.  I'm just having a really hard time coping with all of this.  My entire life it was never this bad.  About 4 years ago I got really sick and I started throwing up blood and I gained 10lbs from bloating and I looked like I was pregnant.  After that I just kept losing weight until I got down to 96lbs.  Once I started eating gluten-free I gained a lot of weight and now I'm back to a normal weight.  I guess my main problem here is I'm depressed a lot of the time because I'm in pain so much still even though I'm eating gluten-free and I don't understand why.  I'm also depressed that the things I can eat is so tiny.  I live in Hawai'i and the options here suck.  Idk if it's better elsewhere but I feel like everything I loved to eat is gone and all I'm left with is just food that tastes bad and I'm having a really hard time getting over that.  It's even harder watching my husband and 2 kids eat delicious things that I can't even eat and it hurts me that I can't eat it too.  Idk how to get over that, or if I will ever get over that.  I would never, ever eat gluten, I'm way too scared to because when I was eating it I was super super sick, plus I know it causes damage to my small intestine so that's just not something I want to do.  I guess I'm just having a hard time coping.  Idk if I just need more time to get used to eating gluten-free or if it's something else I need help with.  Any advice on how to cope would be much appreciated.

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Hi,

I had Celiac disease all my life(I am in my 30s now) as well and only last year November I found out.

I  start my Gluten-free diet about a month and few weeks now. Why? After being diagnosed with Celiac disease via GeneticTesting,  I wanted to have an endoscopy done and further blood work so I continue to suffer through all the symptoms until I could take it anymore and went gluten-free. 

I have had 2 Genetic Reports confirming that I had Celiac disease along with a  very long list of symptoms.

I don't like being gluten-free because the food isn't fun anymore and I can't eat out like I use to.

You have to be extremely careful about everything including your toothpaste!  It's a tough journey but I rather stick to this path than being constantly in pain and having devastating symptoms.

Most of my muscle and join pain has gone and my sense of smell is returning. I don't have any rashes and my skin stop itching. (It was crazy )

I read an article that was talking about some of the foods that say their are certify Gluten-free but have small amounts of gluten in them(20ppm)and I think that that could be your problem.

Also, you have to be careful of cross contamination and that can happen alot in the fields as well as in the facility! (Millet and  quinoa are high risk for cross contamination )

There is also the possibility that some of the foods that other gluten-free people eat and say it's safe because it doesn't affect them may not be good for you. Everyone'sbody is different! 

I can't eat corn, oates and basically no grains (rice included)

I  don't buy the gluten-free process foods that sell at the supermarket because they are a big risk.

I am also lactose intolerant so you see, food choices are very limited but you have to keep the faith.

Look in your area for gluten free bakeries and see if you can get delicious treats to buy.

I  found one a few days ago and I couldn't believe how good the cakes and muffins tasted.

I tried some of the flours but couldn't get my stuff to be tasty like theirs.

The lady that owns the bakery has celiac disease (diagnosed in 2008) and decided to start making her own products after she couldn't find tasty  gluten-free snacks.

Hi,

It sounds to me that your daughter may have other food allergies or there is cross contamination occurring somehow not matter how careful you are.

Cross contamination can occur in the field that the crops are planted and not necessarily the processing facilities. For that reason,  I  have opted to go grain free.

Lactose Intolerance is also a symptom of Celiac disease so removing dairy products from her diet was a great thing. Also be very careful of those Gluten-free process foods since they contain ingredients that does not go well with everyone who has Celiac disease.

Corn can also cause problems and make sure you use grass fed beef and cage free eggs!

A food allergy test is a great idea because it would tell of other foods that may be causing the immune system to react negativity.The good news is that she is young and her recovery will be shorter than someone who 

P.S You show have her vitamins level checked for deficiencies as well!