ShayFL

Three weeks ago I punched in the name of an old friend into USSearch. I paid 9.95 to get a list of addresses and phone numbers that corresponded to her name. I have done this two other times in the last 10 years and each time I diligently sent letters to each address hoping for a response. But one never came. Last time I paid to get addresses for her mother's name with the same results. Nothing.

Why was it so important that I get a letter to this old friend? I met "Robin" in the sixth grade. Her family moved into our rural community and were considered outsiders by nearly everyone and as a consequence "Robin" didnt make too many friends. She was a funny girl with big blue eyes who liked to dance even if everyone was looking. I was never much for popularity or fitting in myself, so I took to "Robin" very quickly and we became fast friends.

We did a lot of the normal things that young girls do. We talked about boys, giggled and wondered if we would ever get boobies. We had sleepovers and ate bags of Funyuns together. We climbed trees in our big pasture and star gazed at night. For 3 years she was my best friend. We were inseparable. However, there was a darker side to "Robin" and at times she would become moody and withdrawn. It was in these times that I recognized a bit of myself in her. She never wanted to talk about what pulled her away like that, and for a time, I never pushed for answers. I had my own secrets and the last thing I wanted was to lose my best friend. What would I do if she found out? Found out that my older brother had been molesting me for over 8 years. As it turns out, I would not lose my best friend at all, instead, I would find the one person who knew exactly what I was going through. The one person who would not judge. The one person who could cry with me. The one who could dream with me of a better life. An escape.

I can recall one particular sleepover at her house as if it were yesterday. She and I were jumping on the bed and making up a rhymes when her brother came into her room. He grabbed me and tried to hold me down. At that moment I saw a side to "Robin" which I had never seen before. She threw herself on her much larger and stronger brother and scratched at him until he let me go. She yelled at him, "Larry you cannotl not touch her like that!! You cannot hurt her like you hurt me!!" Woah! I knew there was more to this than horseplay. After he left, I confided to "Robin" that my own brother had forced himself on me many times. And she confessed the same to me. We were young and scared. Words like "family therapy" and "abuse counseling" were not part of the average households vocabulary. And both of us had been threatened with violence. What a sad sad place to be. So in each other, we found love, acceptance and courage. We grew up, our brothers moved out and we went our separate ways.

So I paid my 9.95 again I didnt expect this time to be any different, but I was hopeful. So off the letters went again. In the letters I told "Robin" how much she meant to me at a time in my life when I felt so alone. I thanked her and let her know that her life mattered to me and that I had never forgotten her. I asked her to call me if she wanted to. A day or so after I mailed them, I forget about it. Life goes on......

Yesterday, I took my daughter shopping after school and had a great time with her at the mall. We got home close to dinner, so I didnt check my messages on my machine until we were through eating and had cleaned everything up. Much to my absolute shock and joy I heard the words, "Hi this is "Robin H" and I am calling for Sharon B. I hope you get my message and call me back at ........" I couldnt believe it! It was her. OMG!! 27 years later and it was her!

I called the number she left right away, but got her cell recording. I left a message thinking I would not hear back from her until today. But she called me back within the hour. We talked for a good 2 hours going over what we remembered from our childhoods and where we are today. It wasnt awkward. I talked about my failed marriages, my bulimia and all of the therapy I needed to recover and get well. She also shared with me her failures and triumphs, albeit with a more sorrowful tone.

And here is where I am so deeply humbled and thankful for my life and all of the blessings I currently have. "Robin" cautiously told me the story of her life where we left off all those years ago. Her family moved numerous time from Florida to Ohio and everywhere in between. She did finish high school, but got into drugs and alcohol. She said she still works the 12 steps program. Her brother left home only to become indigent. He was arrested several times and eventually was required to serve 5 years in the state pen. He used his bed sheet one night to hang himself at the age of 31. It took her many years to come to terms with this.

She worked many different jobs, and while she didnt mind the work, she found it increasingly hard to work with "people". She suffers from extreme depression and 4 years ago was dx bipolar and is on medications and disability. She lives with her Mom and is unable to work now or be self sufficient. She said to me, "Sharon I dont have much. I've got a room, my dog and a guitar. But it's enough for me."

This made me cry because even though we both had similar childhoods, and rough lives, I got to be healed. And I have so very much: a loving husband, a beautiful daughter, 3 dogs, a nice house and a good job. And yet....sometimes I complain.

"I've got a room, my dog and a guitar. But it's enough for me"

I am deeply humbled......and forever changed.

Several other things come to mind as well: fatty acid deficiency. Too many Omega 6 (vegetable oils) and saturated fats and not enough Omega 3 (flax, fish, walnuts). And/or the inability to digest fats well. Research that. You might benefit from digestive enzymes that contain lipase to help you get the healthy fatty acids.

Also low HCL (stomach acid). It naturally decreases as we age, but can be low for other reasons (including hypothyroid):

Here are some of the common symptoms and disorders caused by low stomach acid1,3:

* Bloating, belching, and flatulence immediately after meals

* Heartburn (often thought to be caused by too much stomach acid)

* Indigestion, diarrhea, or constipation

* Undigested food in stools

* Acne

* Rectal itching

* Chronic candida

* Hair loss in women

* Multiple food allergies

* Iron deficiency

* Weak, peeling, or cracked fingernails

* Chronic fatigue

* Adrenal fatigue

* Dry skin

* Various autoimmune diseases

***Please be aware that most labs in the US are using old and outdated TSH ranges. Your doctors say you are fine because they are not aware of the new TSH ranges. They just look at your labs and dont see anything out of range. Do go to stopthethyroidmadness. Get copies of your labs!!

It said taxonomy unavailable. So I do not know the specifics of the bacteria. Ali I know you can have lots going on in there with perfect labs. When I said I didnt worry about it, I meant I wasnt interested in abx or harsh herbs to fight an unknown enemy. I focused on things that were more concrete. And it did pay off for me.

Over time I did several parasite cleanses and am now SCD mostly. I am going to do a trial of HCL again too.

My symptoms are GREATLY improves overall and I cannot complain. I have healed a lot in the last 6 months. Not perfect. But way better. I dont get bloating anymore. My BMs are still not always solid, but arent liquid either and I see some undigested food, so hoping the HCL will seal the deal there. HCL also kills off yeasts and bacteria that dont belong.

I took one cap with lunch just now and no burning, indigestion or heartburn. So obviously I could use a little more.

I got sessions for free. I live in Tampa near USF. USF has a Psychology department which offers Ph.ds. They have a program that you have to apply for. If you have low income, you can get free counseling by someone who is nearly finished with their Ph.d.

You might want to look around your local to see what is available either free or on a "sliding scale".

Thyroid was my FIRST thought as well. Dry skin and thinning hair are CLASSIC symptoms unfortunately. You might say that your thyroid was tested and your doctor said everything was fine. I was told that foir 12 years while being severely hypothyroid. Check out this site:

www.stopthethyroidmadness.com

And see about getting the proper testing and interpretation of your tests.

Also, low Ferritin (iron stores) can cause severe hairloss. Anything under 50 is suspect. Maintaining a Ferritin of 70 for 3 - 6 months has shown to regrow the lost hair.

Low Ferritin is also associated with hypothyroid. Do you know your ferritin level?

B vitamins are also essential to healthy hair. Look for co-enzymatic B's as they are easier to absorb. Country Life has some and are gluten-free.

I did some surfing and found there is a connection between hypothryoid and eosinophilic gastroenteritis. So make sure they test your thyroid antibodies as well. Autoimmune diseases cluster.

Hope you find solution soon!

It is so easy in this type of forum to be offended. The truth is that typing is the WORST form of communication there is. You cannot see facial expressions, a persons eyes or hear inflection and tone of voice. I should have said "some" Celiacs.

Lack of careful proofreading can really get you hammered. I have never seen any misunderstandings at my local Celiac group meetings which includes official dx Celiacs, self dx Celiacs/gluten intolerants, etc. It just doesnt happen. People are nice and you can see it in their body language, their eyes and hear it in their voice. Mistakes are made, but easily corrected and no one gets upset.

Now I will back out of this thread because it appears to be causing a lot of stress and discomfort for many who have joined in. It will take everything in me to NOT click on it anymore.

But it is not nourishing me and I dont feel it is AT ALL helpful to he original poster.

Hi Cindy!

There is a PF Chang's at the Westshore Mall which is maybe 3 minutes from the airport. We also have Pei Wei, Outback, BoneFish and Carrabas nearby. Very close to where you will be. If you have $$$ and want a really nice place the Capital Grill at International Mall has a gluten-free menu. Or Ruth Chris Steakhouse.

Enjoy your stay!

Another Tampa person....cool.

Yes there has to be an active outbreak of DH to get a proper biopsy.

Here is the thing with Enterolab. Most doctors do not recognize it as a valid testing tool. Dr. Fine has not published his work for peer review, therefore, most regular M.D.s will not even look at it. They believe an official dx is only possible with the full Celiac blood panel and a biopsy. Celiac genetic testing is not even necessary for most doctors.

If you have the genes, showed signs of malapsorption and gluten intolerance PLUS a positive response to the diet. You have your answer. If your doctor dx Celiac, then go with that and do not worry about what any future doctors might say to convince you otherwise. And do not be concerned with people on this board who will say you do not have Celiac because you do not have an official dx via blood and biopsy.

There are many hair splitters in here.

Just stick with what you are doing which is a gluten-free diet. Know it is for life. And keep healing!

As for your Son, he will need an active outbreak to get the biopsy. The good news is that would be ALL he needed if it comes up POS. I know you dont want to feed him gluten, but if you could get that rash to come back and get over to the Dermo ASAP you could get your answer and get on with healing.

The Bulimia must be dealt with. I was like you....I purged with exercise and "slim tea". I never barfed. I hate to throw up. ick!!

I tried to do it on my own too many times. I am a very STRONG person. But I finally broke down and got professional help (and dealt with all the reasons I hated myself) and I got a "sponsor" for lack of a better word. Someone I had to be accountable to if I binged. Someone I could call if I thought I was going to binge. Calling beforehand was easy enough. But calling after a binge was the worst. So it only happened 2 times and I decided I would never have to call that person again. I would not binge again.

And that was some 15 years ago.

I would be delighted and overjoyed to know someone who suffers from Bulimia will get the same help that I got. You can do it, but do not hesitate to get help.

I don't know why people here have to argue about it and try to convince others that Celiac is a serious problem and gluten sensitivity is not. Why do people care who's condition is "worse"?

It's psychology. People want to feel special and unique and they do not want someone who is not in their club to think they can be. It is the same as when my Dad killed himself and people say, "I know how you feel." Inside you are screaming...."NO YOU DONT KNOW HOW I FEEL!!!!" How could this person possibly know how I feel because they didnt go through the same thing as I went through. Even if this person saying "I know how you feel" has had a parent die, in my mind, it isnt the same. Even if their parent died of some horrible painful disease and they had to watch them suffer for years. In my mind, it isnt the same as having your Dad pull out a gun and blow his head off. It is different in my mind.

So it is with Celiacs. They have an official dx and they are not going to hear any part of someone who is self dx or gluten intolerant through Enterolab. It just isnt going to happen. Just like I will never believe someone whose parent didnt kill himself understands how I feel. They dont.

The quarreling will continue until the people who come in here "fighting" put down their gloves.

***I edited this post to be more relevant to this thread.***

That is pretty crappy service. I might have to complain to the owner. Afterall, they are there to serve you and health food stores would be out of biz without peeps like us.

On another note....hummus is one of the easiest things in the world to make and it is naturally gluten-free (when prepared from a recipe). You cant trust stores/restaurants though. Here is a simple recipe:

Prep Time: 10 minutes

Ingredients:

* 1 16 oz can of chickpeas or garbanzo beans

* 1/4 cup liquid from can of chickpeas

* 3-5 tablespoons lemon juice (depending on taste)

* 1 1/2 tablespoons tahini

* 2 cloves garlic, crushed

* 1/2 teaspoon salt

* 2 tablespoons olive oil

Preparation:

Drain chickpeas and set aside liquid from can. Combine remaining ingredients in blender or food processor. Add 1/4 cup of liquid from chickpeas. Blend for 3-5 minutes on low until thoroughly mixed and smooth.

Place in serving bowl and eat!!

My last one was by MetaMetrix. My doctor ordered it. Everything was pretty good. I had low bifidum and one bacteria that was slightly elevated. She saw nothing to worry about, so I didnt. My issues are mostly neuro in nature.

Hopefully you have a good doctor who can help you.

Donuts and pizza were my drugs of choice when I was bulimic. I came to view them as just that...."drugs". And once I licked my addiction for good and years went by without them, I learned that I no longer craved them or wanted them. They make me feel a bit ill just looking at them. I see all that nasty fat and goo....they just dont appeal to my cleaner taste buds now. Thank goodness!!

Welcome to the boards.

First let me say that Enterolab cannot dx Celiac. It can only show gluten intolerance and if you opted for the gene testing it can show if you have the recognized Celiac genes. Having the genes does not mean you have Celiac disease. It just means you have the potential. Also, saliva does not dx Celiac either. It can only show gluten sensitivity.

There is a difference between the two. If you are still eating gluten, you should go to a doctor and ask for a full Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Then based on the results of these, you may need a biopsy. This is how you can be dx Celiac. There is no other way for an official dx. Anything else might just be an intolerance.

No that test was not sufficient for your son. A dermatologist needs to biopsy the healthy skin right next to the outbreak (not the lesions). This is how DH/Celiac is dx. And he should have a full blood panel (above) as well.

I hope this helps.

I am just glad that I am not the one passing the hot potato in here.

In the 5 plus years I counseled people with health issues, I can honestly say that I did not judge anyone for the doctors, herbs, supplements, diet, methods, testing, etc. they choose for themselves. Even if they make a mistake. It is theirs to make and they should not be judged for being human and wanting to do what they felt was right for them at the time.

The only person we can convince of anything is ourselves. So people...you can come in here till your blue in the face standing your ground....but you will not make a believer out of anyone but yourself. You will not win because the players in here are in different ball fields.

Full Celiac panel, biopsy, gene testing, Enterolab, gluten-free diet trial, acupuncture, supplements, herbs, biofeedback, witchdoctor....who are we to judge?

We should all be able to make our own decisions about our health and be supported for doing so. We should also be able to come in here and give our honest experience about something we tried (Enterolab) without being attacked and judged.

And now I will move on to other threads where people actually need help...........

It is believed that every cell in the body renews itself in 7 years. Some renew daily, some monthly and so on. But every cell you have right now will be different in 7 years time. So it is possible that if you are 100% gluten-free for 7 full years that you might "tolerate" gluten again after that. BUT, you got an autoimmune response to gluten at some point before gluten-free, so you will likely get it again. Any stressor could be a trigger: an infection, a pregnancy, a job change, a move, a marriage, a divorce, death of a pet, death of a family member, death of a friend, natural disaster, car accident, an injury, a parasite that is picked up somewhere, and so on.

Maybe you could live a perfect stress free life in a bubble somewhere enjoying your pizza and beer.

Im waiting for gene therapy.

Right. I have not been on these boards as long as many. That is why I said "I" have not seen......It is just my experience so far.

It is much like the argument over whether sugar is evil, Glutenese should be used, carbs in the diet or vaccinations. There will be people on both side of the fence. And quite frankly it makes life so much better this way. It forces us to "think" and not be "sheep". These discussions should be a catalyst for self research regardless of how knowledgeable some of us might sound.....An individual is responsible to see their own doctors, do their own research and listen to their own instincts.

Scott Adams wrote up a very nice article on Dr. Fine/Enterolab:

https://www.celiac.com/articles/759/1/Early...e-MD/Page1.html

Hey I make mistakes. I was misquoting that Europe has discovered 7 new Celiac genes....this was not quite right. The have discovered 7 new genetic regions....a little different. I made the correction and linked to the actual research in a recent genetic thread.

But the question here is do I think Enterolab has validity and my answer was and still is YES.

I was especially pleased with the genetic testing because my symptoms have always been primarily neurological. Very minor GI. I tested NEG for the 2 primary Celiac genes and had NEG blood work.

But my instincts were telling me gluten/wheat could be an issue. Enterolab showed I have 2 copies of a gluten sensitivity gene. And after I learned that, I found research to support that those genes DQ1 are most commonly associated with neurological symptoms with regard to the Celiacs that do not carry the primary genes. Bingo!!

It was EXACTLY what I needed to get me to try a strict gluten-free diet. And guess what? After the first month, I realized that I didnt have my normal 2 migraines. I have not had a migraine since except one small one after I got CC at Whole Foods. 6 months and migraine free!!! My vertigo is also MUCH improved and my neuropathy in my hands and feet are almost nil. Depression lifted as well. My neurological symptoms have responded to a gluten-free diet.

And with me it isnt placebo. That does not work on me though I wish it did. Over the last 12 years I was told by numerous M.D.s and Holistic practioners that I had this or that and each time I believed them and did what they told me to do with no luck.

Enterolab was VALID for me. That's all I can say.

Apparently saying that Europe recognizes 7 other genes up to 9 is a bit misleading (I made the mistake myself).....they have discovered 7 new genetic regions....but not specific genes. The research is ongoing and will certainly change the way we look at Celiac with regard to genetic testing:

Open Original Shared Link

I would say yes Cici. I am using goat milk just fine.

Hi Dawn.... a lot of people in here can testify that in children under 5 or 6 it is hard to get a POS Celiac test. There are a lot of false negatives. And some go gluten-free and get EXCELLENT results in spite of the NEG bloodwork. You can still get him tested to see if it shows anything.

You can, as a parent, try a gluten-free diet. It wont hurt and can be quite healthy. If his symptoms go away, then you know he is at least gluten intolerant.

Mostly you just have to ride it out. Drink lots of water, stick with bland/safe foods and no dairy. Some use marshmallow and slippery elm to soothe the tract. Aloe juice is also very healing.

My symptoms waxed and waned and I learned coping mechanisms. I did go to physical therapy for the vertigo where they taught me exercises to teach my brain to compensate. I also took up kickboxing and the like to regain my balanced. A lot of falls on my bum, but over time, I did get better. So much so that I could teach kickboxing. It was a hard journey though. I still have it some, but it is mild since gluten-free. Just a bit of disequilibrium that is constant. For the neuropathy in my hands, I sometimes wear gloves. I find an alternate sensation can help me not think about it. Or I paint which takes my mind off of EVERYTHING else in the world. Just me the canvas and he paint. IT is very freeing. The migraines were awful and I would get them at least 2 times a month and was out for a good 2 - 3 days each time. I just iced my head periodically, stayed home and did what I could around the house until it passed.

Have they tested you for nutritional deficiencies? Calcium, Magnesium, Iron/Ferritin and B12????

A lack of B12 CAN cause all of the symptoms you are describing.

Abnormal liver enzymes and labs are common with Celiac, but they could indicate other issues as well. My liver enzymes were slightly elevated before gluten-free and are now back into the normal range.

they do have a vested interest in positive results. The more positive results the more people go to these forums and post about how Enterolabs possibly saved their lives.

The thing is I have never seen anyone in here say Enterolab saved their life. And everyone recommends a complete Celiac blood panel. We all do. Over and over again. Go to your doctor first, dont go gluten-free until you do so, ask for a complete Celiac panel and a biopsy if necessary. This is SOUND advice and we all give it.

***This thread was asking whether or not those of us who used Enterolab felt it was valid. We are responding to this.***

Enterolab has not saved any lives, but for many a gluten-free has. The sad truth is that a lot of people DID do a complete Celiac panel and it came up negative. Yet, they respond to the diet. So for some Enterolab is a way to reinforce their need for a gluten-free diet and keep them from cheating. It is concrete validation for their diet. Some order it because they tested POS on the Celiac panel and they just want more proof and to see if they tests results are consistent with their blood antibodies.

Some use it because they DO NOT want an official Celiac dx for insurance reasons or personal reasons.

Anyone can order a Celiac panel via blood all by themselves without ANY involvement from a doctor at all. You go to www.directlabs.com or www.healthcheckusa.com and you order them. No questions asked. They send a req. and you go to the lab of your choice. When the results come in, they email them to you. Simple as that.

Enterolab is just another tool. It doesnt dx anything. It is not a savior. But many of us feel it has validity. It confirms what we already know or gives courage for those that want to try gluten-free, but are afraid.