still undiagnosed................

[Debs]

I am 36 years old. I have had problems for at least 10 years. I had a blood test done which showed a positive TTA, IgA at 29 with the normal being less than 20, however IgA and IgG were normal. I ended up having a biospy done, however that came back normal???Of course I still have problems,diarrhea on and off, it appears I can ingest a certain amount of gluten and then look out. I am tired all the time, weak often, and I have pain in hands, hip gives out. I don't know what to do. I saw the specialist, prior to the biopsy, he seemed quite sure I had celiac disease, once completed however he said I did not. Now what do I do. Maybe I don't have this disease.........................

[aklap]

Hi Debs,

This whole thing can be a can of worms to figure out. The Doc is right...you may not have CD...yet. Unfortunately the medical community sees this as a black & white issue - with no gray area. You either have it or you don't. Here is something you need to read: Early Diagnosis - Before the villi are gone

Studies are showing (and actual people I've talked to), that there really is a gray area. This is where a lot of people fall thru the cracks. I am one of them. I dont have CD by the gold standard of biopsy...BUT...I do know that I feel like garbage if I consume gluten. It is possible that if were to continue to consume gluten, that I may ultimately be diagnosed with CD at some point in time. It seems kind of silly to me to actually sit and wait to see if that happens.

As you will find out, there is zero tolerance in a GF lifestyle. Any gluten intake will set you right back where you came from - and maybe worse - the risk of developing other auto-immune diseases.

All I can say to you is read and learn as much as you can about this so you can make an intelligent decsion.

Knowing what I know now...I think I'd do a gluten free trial for 1 month or 2 and see how you feel. Your body should be the ultimate decsion maker in this. If you feel better off gluten...so be it!! People put themselves on all kinds of diets for all kinds of reasons. So why not one that makes you feel better!

Good luck in whatever you decide to do!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[nabruzi]

This sounds so familar - My son (2.5) tested "weak" positive on the IgG not the other two and had a "normal" biopsy. Our GI specialist seemed certain it was CD after a look see (prebiopsy results) and then once they came back he said nope he is completely normal.

I'm so frustrated...I feel like we need the actual diagnosis to move forward....but no way am I taking him of the GF diet.

Nina

[WheatFreePDX]

My 1.5 son shows all the symptoms & his GI was as sure as I was that he had celiac (I do). Blood test were only slightly elevated at 6.8EU (normal was supposedly 20 or less). Biopsy came back fine but he still has all the symptoms so I ordered the gluten intolerance test for him from Entero Labs.

It makes sense to me that he is gluten intolerant & not YET celiac. This stool test is supposed to be more sensitive. I just got it today & will send it back in tomorrow & post the results!
_________________
Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

[aklap]

[PrtPaty]

Hi all,

When I read about all of you having little children with CD symptoms I just feel like crying. I feel so badly for you all. I remember when my kids were little ,and I was so distraught about their allergies, diahrrea and migraines. I felt so helpless. Doctors were no help, and I only read one book that even mentioned CD or GI. I knew there had to be an answer, but I couldn't find it. It is painful thinking about all their suffering.

If the internet and this board had been there back 25 years ago, I'm sure that things would have been much different. If I could do it over again knowing what I know now, I'd have put them on a GF diet in a second. (Myself too). (Now it is much harder to convince them to try it)

At least we now have tests even though they are not perfect yet. So, I would encourage anyone whose kids have symptoms, regardless of the test results, to move forward and give it their best try. You have nothing to loose except years of pain, frustration and suffering, and to gain-happy, healthy kids.

God's wisdom and blessing to you,
Patty

[aklap]

Amen, Patty!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Maria1223]

I just found a wonderful chiropractor that Dx me with fibromyalgia. He Is working really had to help me to be pain free. well I haven't been able to walk that good for 3 days, sleeping is a problem & fatigue. he said that I should take flexaril. I've been on flexaril & toradol for 4 days & it hasn't helped . so he is sending me too get some kind of special x-rays to see what can be done I'll keep U updated.

[aklap]

[Dee Alleyne]

Al,

Thank you so very much for the link to the lecture by Dr. Kenneth Fine "Before the Villi are Gone". It confirms what I have been trying to convince my doctor of.

My blood tests are positive for celiac, but my biopsies were "inconclusive", showing only "chronic inflamation" with no damaged villi. Given only my limited knowledge of celiac, I asked my doctor whether this could be the early stages of celiac, since it is inflamation that damages the villi. He said no, and that I didn't need to go wheat free. So he did thousands of dollars more of invasive tests, all of which were, not surprisingly, negative.

So I still have severe abdominal pain, gas, bloating, chronic diarrhea, fatigue, osteopenia (since age 40). I have said all of my life that my digestive system is just not normal, and it has been written off to IBS. In retrospect, celiac makes so much sense given my history. Since I was in my early 20's, my legs swell every day, whether I am sitting at my desk or exercising all day. I have always felt cursed by this "old lady" symptom that has never been explained. But I have read this is just another celiac symptom.

I have been contemplating going gluten free and just seeing how I feel, but it will be so hard for me - as a vegetarian, whole grains are a huge part of my diet. But I will do it if I can confirm that I really do have celiac. I am hoping to find Dr. Fine, since the transcript of the lecture was given in Louisville, very close to me, I am hoping he practices there.

Although wheat free will be difficult, I am beginning to feel like I have found the answer to more than 20 years of digestive distress. Thanks so much for the information.

Dee Alleyne
North Middletown, KY

[aklap]

Hi Dee,

Welcome to the board!!

Yes, your Doctor probably would say..."No damaged villi - No Celiac" That is the definition of CD. Unfortunately most doctors do not recognize the full gluten sensitivity spectrum. CD is just part of it. Villi damage is End Stage in the disease. Many feel there is something called Non-Celiac Gluten Sensitivity. This is what I have. My biopsies were negative, my blood work was negative (I had been GF when it was done) and my gastro said - "No CD - only chronic inflammation. Take your meds like a good boy and deal with it". I did not accept his answers because I was feeling like garbage all the time (abdom pain, gas, bloating, a little diarrhea, weight loss of 50 lbs, feeling "hung over" w/o the alcohol). Luckily I did my own research and found gluten sensitivity.

All of your symptoms sound like they could be gluten related. Have you seen The Symptom List? Going gluten free would be one way to see. Particularly if your blood tests were positive. Doing the EnteroLab tests would be away of double checking.

Sometimes you have to draw the line and do what you think is right. At this point the Doctors haven't been much help to you, right?? So, you've got nothing to loose and everything to gain by doing it. It does not require anyone's permission, there's no perscription needed, just a willingness to be healthy is all you need. That was the conclusion I had come to 2 years ago. I do not regret it.

Dr. Fine is in Texas I believe.

Dee, I wish you luck in your knowledge quest. Sometimes it can be a long, winding, rocky road. But to me, it sounds like you are on the right path. I hope you hang out and learn as much as you can to make your decision. If you decide to do it - we'll be here to help you thru it the best we can! No, going GF is not the easiest thing in the world. But it is very doable. It could very well get you feeling better than you ever thought possible.

Take care!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Dee Alleyne]

Thanks for the reply and support. I just now found my way back to the forum, since I am making a committment to go gluten-free June 1. I have been sort of weaning myself off of wheat for a few weeks, and preparing myself for the challenge. You are absolutely right, I have nothing to lose. My husband reminds me it will be easy if I start feeling better.

I am joining the forum and will continue to turn here for support.

Dee Alleyne

[aklap]

Hi Dee,

I think that's great!! Have you noticed any improvments with the amount of reduction you've done so far? Don't be discouraged if you havent, it make take some time.

If there's anything we can help with...don't be afraid to ask!!

Good luck!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Wendy O]

How long does it take? I have been lurking here since I first found out I had bloodwork positive for Celiac in January, and have been Gluten-free (at least to my knowledge) since the day of my endoscopy, March 17th. And I am not feeling better. Should I be worried that I have been unintentionally eating gluten, or does it just sometimes take a while before symptoms improve. I struggle a bit with the diet, especially because I am also a vegetarian, but I think I have done well with avoiding gluten. Thanks so much for any insight.

Wendy

[skbird]

Hi Wendy -

It can take some time. Two months may not be long enough. I have heard of people taking at least 6 months before starting to feel better.

What kinds of symptoms are you having? Are you taking vitamins?

I had a bunch of good days but I have been having some rough days the last couple of months and some have been from accidental ingestion of gluten, but I think there might be something else I'm having trouble with, maybe corn. I am in the middle of a bad IBS flare up right now and I'm 99% certain there was no gluten involved. It's an endless puzzle at times...

But for the most part things are much much better!

Take care
_________________
Stephanie