anyone else Gluten Free?

[MoniDew]

with one in every 200 people worldwide, and one in every 133 in American being gluten intollerant, I wonder how many here are gluten free?

I am very gluten sensitive, although not diagnosed as celiac. I must avoid every contact (skin, mucous membranes, breathing, cross contamination) with gluten. Anybody else experiencing gluten intollerance issues?

Approx 97% of those who are gluten intollerant never put the pieces together and figure out "That's what it is!"

[HomesteadBaker]

How did you put the pieces together?

You look great, by the way!

[MoniDew]

Thank you! Since writing the above, I have been medically diagnosed for genetic celiac sprue. My self-diagnosis has been confirmed.

For me, getting this confirmation was an extremely difficult process. My journey to a truly accurate diagnosis was emotionally excruciating! (Sorry about the dramatic overstatement, but it really was!)

I've never really told the whole story to anyone before, so no one really knows what I went through - with the exception of my family members who were witnesses to my journey. I hope you don't mind the small encyclopedia below. I'm just using this as an opportunity to get it all down somewhere. :D

I wasn't really clued in by the GI tract symptoms. (gas, bloating, belching, etc.) I just thought that was "normal." As oblivious as I was to this, I was still aware that I had major, multiple, lifelong food allergies. The weird thing is, the foods to which I was allergic seemed to change, come and go, with the exception of wheat - which always seemed to be a problem for me. (Very common that celiacs have multiple food allergies!)

What my FAMILY was most upset by were my behavioral/emotional/neurological symptoms. They were disrupting not only my life, but theirs! Both my immediate and my extended family were CONSTANTLY telling me that I was mentally ill. (Imagine how fun that was!) I was inconsistent, unpredictable, unreliable, had NO memory, NEVER slept, had severe mood swings, was deeply depressed, my behavior was wildly erratic, I would emotionally retreat, couldn't relate/connect with myself or others, etc. They were determined that I have a diagnosis of mental illness. So, they continually sent me back to the doctor's office in search of a diagnosis.

But, when I would speak to the doctor and go through the list of symptoms for mental illness and/or Alzheimer's/dementia, etc (not oriented to time/date or location, unable to separate fantasy from reality, auditory or visual hallucinations, gaps of time for which I couldn't give account, unable to recognize familiar objects or people, etc) I had NONE of the symptoms! NONE! The doctor would tell my family I was NOT mentally ill and he didn't know what the problem was, and my family would tell him something was definitely wrong and to please treat me for mental illness anyway! (YIKES!) He would then experiment with various drugs to see if they would be effective, and within 24 hours of being on an anti-psychotic, I would become very psychotic, and he would have to take me off of them! (Yes, anti-psychotics cause psychosis if you DON'T need them.)

The next thing that happened was my miracle. I picked up a book about diet/nutrition, that specifically dealt with treating emotional symptoms. The first thing it said to do was remove gluten from the diet entirely. This gluten challenge was my eye-opener. My symptoms greatly improved (but didn't vanish completely.) Only when I was accidentally exposed to gluten did they return to their previous severity.

After one episode, to which I was exposed to gluten and had a psychotic breakdown, my son was so deeply upset by the event that he basically threatened me. Your diet alone isn't good enough. You need to not be like this, ever! Go back to the doctor and be put on medication that makes you not act like this or I will find another place to live. (Well, he's right!! This is NOT how a mother should act! EVER!)

So, back to the doctor I went, but this time armed with more information. I told him what was going on, what made it better, what made it worse, but then I added that I HAD TO BE GLUTEN FREE completely! He says, NOW YOU TELL ME! (LOL!) He said, if you have had celiac disease this whole time, your GI tract is severely damaged by now. You are unable convert your food into the key nutrients you need. One of the conversions I wasn't making was turning the folate in my food into the methylfolate that my blood, brain and body needed. So, he gave me a Rx for methylfolate. He said, you should start feeling better right away, and slowly get better and better as time goes on. (given that I stayed on my Gfree diet.)

Turns out, methylfolate is the backbone for many neurotransmitters - Dopamine, Serotonin, Nor-epinephrine, etc. I had no neurotransmitters in my brain!! No wonder my behavior was so erratic! Suddenly, I was able to sleep, focus/concentrate, connect with myself and others, etc. I could remember conversations and events. I felt light, happy, refreshed, content, peaceful. It was totally amazing! I was a brand new person!

It continually amazes me how this one little change has made such a gigantic difference in my life. I have truly enjoyed telling my story. Thank you for the opportunity!!

[dairymon]

Wow....Monica..we have chatted online once but I am truly amazed at your strength. I stand and applaud you..... now the signature makes sense.

You go girl!!!!!!

[MoniDew]

thank you so much!

[HomesteadBaker]

Wow! What a roller coaster you must have been on!!

So how about a "gluten-free primer" for those of us interested in learning more?

Thanks so much for sharing your story.

[MoniDew]

Gluten-free primer, eh? Okay, I'll give it a shot!

Gluten is a complex protein structure, found in several grains. The grains that are most problematic are those genetically similar to wheat. (wheat, rye, barley, the ancient forms of wheat like kamut and spelt. Of course, this includes ANYTHING made from these grains: cereals, breads, flours, pastas, pastries. Cooking and/or processing does not alter the protein structure. "White" as opposed to "whole-grain" still contains sufficient protein to wreak havoc).

(Oats are in a different genetic strain, but in the US, most oats are cross-contaminated during shipping, storing, or processing. If they are produced by a dedicated facility, they may be safe enough for the less sensitive to enjoy. Otherwise, I would stay away from them, just to be safe!)

In the gluten-sensitive person, the digestive tract is not able to break down the complex gluten protein structure. The undigested/partially-digested protein molecule is then sent into the bloodstream where it is flagged by the immune system as a foreign invader. The immune system becomes hyper-alert to these proteins. We are talking about the most ubiquitous food substance in the Western diet! It's like having a non-stop invading army in your homeland. Smart immune system tries to stop them at their point of origin - which happens to be the small intestine - the point of absorption for these proteins. So as the immune system is attacking the foreign proteins, it also is attacking the tissues of the small intestine. That classifies this as an auto-immune disorder (because the body is attacking and destroying its own tissues.)

The immune system is attempting to perform a job that the digestive system could not do. But, the immune system is not designed to perform the function of digestion, so it cannot successfully break down the proteins either. Instead, it produces an "intermediate" product that is HIGHLY TOXIC to the blood, brain, and body of the gluten-sensitive person. They are slowly being poisoned by their own bodies (auto-intoxication.) This can lead to a malfunction of nearly any organ or tissue in the body, making gluten intolerance a great mimicker of all diseases. It often takes more than a decade for a gluten-sensitive individual to get an accurate diagnosis!

Auto-intoxication is a cancer-spawner. Cancers of the digestive tract are much, much higher in celiacs than those with normal digestive tracts. My family history of cancers (one grandparent died of stomach cancer, the other of bladder cancer, both on my mother's side) aided my doctor in diagnosing me with genetic celiac sprue.

Because the digestive tract is destroyed by this process, many other digestive malfunctions are quite common in gluten-sensitive persons. (Crohns, colitis, IBS, etc)

It is quite common for the gluten intolerant to have multiple food allergies, esp to other complex protein structures such as casein, the protein structure found in dairy products, or to soy, peanuts, corn etc.

(If the immune system is required to perform the function of breaking down casein, an even MORE TOXIC substance than the byproduct of gluten if formed! When these two toxic products coexist, and then cross the blood/brain barrier, a form of insanity/schizophrenia exclusive to celiacs results. This is how I was diagnosed.)

Many of the vitamins the body needs are produced in the digestive tract. If the digestive tract is in ruins, multiple malnutrition of several key nutrients is the result. Any of the body chemistry (biochemistry) requiring these nutrients is not made. In my case, I was missing all the neurotransmitters that utilize folate. My doctor was able to prescribe the correct type of folate to correct this.

The digestive tract is also where the key cells of the immune system are matured (killer B cells). If the GI tract is in ruins, then the immune system cannot mature killer B cells, greatly weakening an already hyper-vigilant immune system. A personal history of chronic infections can aid a doctor in making this diagnosis.

Untreated, it can lead to a person not being able to digest/absorb ANYTHING. (failure to thrive syndrome.) (Celiacs don't have long lives, undiagnosed and untreated.)

But! The good news is that it is 100% treatable by the complete and total elimination of gluten (and casein) from the diet. This MUST be a lifelong commitment. (even a tiniest crumb of bread is TOXIC to the celiac).

What a celiac CAN eat:

ALL fruits & vegetables to which one is not personally allergic

ALL tree nuts to which one is not personally allergic

ALL legumes (peas & beans - with the exception of soy, for those who are allergic and any others to which one may be personally allergic)

ALL grass-fed meats (beef & lamb) (NOT grain-finished - the GI tract of an herbavore cannot process grains either! I find that the grain structure is present enough in grain finished to cause me problems upon ingestion)

ALL wild-caught fish (NOT farm raised - they are fed grains)

ALL poultry and eggs (the GI tract of poultry IS designed to process grains! They process grains correctly and their meat/eggs typically pose no problem to the celiac! Of course, free-range organic is best) (with the exception of those to which one is personally allergic)

Milk/dairy substitutes which do not contain casein, and to which one is not personally allergic

Non-gluten containing grains such as rice & wild rice, quinoa, amaranth, (millet & buckwheat may be problematic to some because of the similarity of their protein structures to gluten.) (Corn may be problematic to some. I find that I tolerate white & blue corn much better than yellow corn)

I hope that is a sufficient primer. If you have any further questions, I will do my best to answer them.

[MoniDew]

oh, and btw:

I've had restaurant staff offer to sanitize shared equipment for me to prevent cross-contamination. (bleach, bactericides, fungicides, etc.) Sanitizing may kill germs but it does NOT "kill" gluten! Gluten must be AVOIDED, it cannot be "killed."

Keep clearly marked SEPARATE containers and equipment in your home kitchen. (your own toaster, breadmaker, etc) (I've been cross contaminated by ONE CRUMB of regular bread in MY margarine!) Thoroughly scour countertops, microwaves, etc, soap and warm water is fine - just WASH THE DISHCLOTH before reusing.

In my experience, another common source of cross contamination has been packaged foods that are produced in a facility that also processes gluten or casein containing foods. Many manufacturers now use disclosure labeling, but not all! When you are buying groceries, try (if you can) to purchase products from manufacturers that specialize in single foods - i.e. rice from manufacturers that only produce rice (like Lundberg) Try NOT to purchase from multi-product manufacturers (WALMART brand has been the WORST SOURCE for cross contamination in my experience.)

In the event of accidental exposure, there is nothing you can do to remove the gluten from your body. You must simply ride out the storm until your liver, immune system, etc do all they can. It will be several days (4 to 7, in my experience,) before you feel back to normal.

[HomesteadBaker]

Thanks, Monica!

I work as the Cafeteria Lead (i.e. mean boss lady LOL) at the local high school and have several students that have Celiac's. It is sometimes difficult to get them fed with something other than a chicken-topped salad because there is wheat, in one form or other, hidden in things you wouldn't expect to have wheat in them!

I have been considering doing a "dietary experiment" on myself to see if I feel better while eating gluten-free. Three weeks should begin to give me an idea of any difference, don't you think?

[MoniDew]

Yes, there certainly IS wheat hidden in things you wouldn't expect! I get glutenated accidentally far more frequently than anyone ever should! (there are NO safe limits of gluten exposure to a celiac!)

I think you are a fantastic cafeteria lead for caring so much about your students! May your tribe increase!! (and yes, we celiacs are profoundly grateful for all the chicken-topped salads you make for us! :D )

As for doing a gluten challenge yourself - yes! I think EVERYONE should! You never know until you try, right?

How to do a gluten challenge: Eliminate all forms of gluten for a period of three months. Then, within a 24 hour period of time, consume an average daily amount of your former gluten-containing foods. Then, immediately go back to the gluten-free diet and wait to see if you have any reactions. If you are a gluten-sensitive person, you should begin reacting some time within the next 24 hours, and may continue to experience reaction up to 7 days.

[MoniDew]

update to the gluten-free primer

After consulting with my doctor yesterday, we are testing to see if the gluten-containing intermediates are being passed to me through animal foods. Evidently, I jumped the gun on suggesting it was acceptable to consume animals that consume grains.

We are testing my blood now for IGG antibodies in several types of foods, and how I am reacting to them. I will let you know the results as soon as I find out. Thanks for caring!

[gregm112]

I'm 28 and have had back pain since high school from scoliosis. About 5 years ago it went from my back to hips. Within the past few years it's spread to all my joints, tendons, muscles. I can't sleep more than 4 hrs before I wake up in pain. I'll stretch over 4 hrs a day which gives temporary relief to be able to sleep.

I did blood tests this week for rheumatoid arthritis which came back negative. Then the doctor had me test for HIV, that came back negative too.

So I did another google search today of my symptoms which brought up celiac disease. I didn't remember hearing of it until I read of gluten intolerance and remembered Moni's post here, hehe. Ty Moni great info!

So that's where I am now, clueless lol. I'll be going to see my family doctor later this week.

How did you go about diagnosing celiac? Blood test, biopsy, or something else? TY again.

[MoniDew]

My doctor was able to diagnose with blood only, not biopsy. (which I wouldn't have agreed to anyway.)

You have a lot of the same signs and symptoms that I do/did. May I ask you a few questions?

Does anyone else in your family have a diagnosis for celiac disease? It's genetic. If anyone in your bloodline has the disease, you should absolutely be tested. But of course, that would be too easy. :D

If you are the first DIAGNOSED generation in your family, and this has been going on for a long while without a diagnosis in other members, Do any of them have GI tract cancers? Colon cancer, bladder cancer, stomach cancer, non-hodkin's lymphoma, etc are all much higher in celiacs than non-celiacs, particularly in undiagnosed celiacs. If you have a long family history of cancers - to the point where it seems an inordinately large number of family members all having cancer, and people dying young (age 40-60) in your family (even breast cancer or things that seem unrelated) it could indicate underlying celiac disease as the culprit.

I say this because both of my mother's parents died of cancer, and ever single aunt, sister, etc all died of cancer - a rediculous number of people - but they couldn't find a GENETIC cancer. Turns out it was GENETIC CELIAC disease triggering all of it. Being diagnosed myself will save every future generation of my family from this fate.

You have scoliosis. So do I. Do you have a small discoloration at the base of your spine? That could indicate a bifida oculta. (spina bifida is a neural tube defect. It is an opening in the spinal column that does not close before birth. In a bifida oculta, the opening closes later in pregnancy and leaves a mark.)

Neural tube defects often indicate a lack of usable folate in the mother's body at the time of conception. That could be due to several reasons. But one of the reasons is that the mother has celiac disease and cannot utilize folate from foods. Therefore she lacks enough to provide to the embryo at conception. You having scoliosis could indicate your mother has celiac disease, and therefore you could too. This exact scenario helped my doctor diagnose genetic celiac sprue for me.

Also, does anyone in your family have shortened stature (short for YOUR family)? Failure to thrive syndrome? Severe anemia? Mental disorders, including ADD or ADHD; autism or Asperger's; schizophrenia, bipolar disorder, etc? Any of these indicate the lack of usable folate issue, too. Major neurotransmitters in the brain are built on a "backbone" of folate, including serotonin, nor-epinephrine, and dopamine.

Do you have foul smelling bowel movements? Bowel movements that are fatty or foamy? Do you suffer from HORRENDOUS gas after a meal containing grain/wheat products (farting that keeps you up all night and smells like something died? extremely distention in the belly - like 5 months pregnant-looking).

Do you have any other (other than grains) food related allergies? What about other major nutritional deficiencies, such as having a hard time regulating potassium or calcium? If you GI tract has been damaged by celiac disease, you may eventually get to a point where it is difficult to absorb ANY nutrients from food. There exists a potential that you could be starving to death, even while eating 3 meals a day. You could become either extremely OVER weight or UNDER weight, depending upon whether your body is just storing those calories it cannot use, or begins eliminating them rapidly (diarrhea).

Often, celiacs are diagnosed with OTHER GI tract disorders before their celiac disease is finally pinpointed. Have you ever been diagnosed with lactose intolerance, IBS, crohn's disease or colitis?

This is an autoimmune disease. Your body attacks its own tissues in the presence of gluten. Autoimmune diseases tend to run in packs. Do you or any other member of your family have another autoimmune disorder? one that attacks the skin, thyroid gland, cartilage, etc? The underlying trigger could potentially be celiac disease.

PLEASE GET CHECKED. It could save YOU and your entire family from years of pointless suffering. THANK YOU!

[gregm112]

I don't think anyone in my family has ever been diagnosed with celiac, i'll have to double check. I'm not too sure of their medical histories. I did notice discoloration on the base of my spine at one point, but i think it was from my chair at work. Does the area that is discolored also rough to the touch, like sand paper?

My mom's side of the family is asian, they are all tiny lol. I'm 5'10" 125 lbs. I think you mentioned erratic behavior from folate deficiencies which i can relate to.

The only GI tract problems I seem to have are diarrhea in the morning sometimes for months at a time before it goes away for maybe a week and comes back. I haven't been diagnosed with any GI tract disorders, but I've never mentioned this to my doctor yet. The RA specialist I saw yesterday said I was malnourished. It does feel similar to starving to death, or as if my muscles were dying.

Also I was told I have enlarged red blood cells. My lymph nodes are always swollen too. Thanks for helping me think this through. Hopefully I'll be moderately prepared with questions and answers for the doctor this week.

[gregm112]

I finally found out what was wrong with my stomach!

Yesterday I had a stomach ache, bad enough to go to the hospital. Tests came back and showed I have Ulcerative Colitis. Just thought I'd share if anyone else is having similar problem and can't find a diagnosis.