neesee

I found this on the delphi boards. Open Original Shared Link

I didn't fuss about anything at all. It's been over 20 years now and I'm doing fine. No cancer, no major celiac problems. If I had it to do over, I would get a new colander and maybe replace very scraped up teflon. I didn't use teflon back then. I was too sick to think about things like that. You've gotta love the internet! I didn't have that around to influence me in any way. Maybe that was a good thing.

neesee

I believe that it was noted before, that only the individual poster can see his/hers warning levels, with the exception of the moderators. Other members here cannot see other warning levels except for their own.

Sorry neesee, your feeling were hurt . Sometimes a little humor can be taken the wrong way.

Giving someone a warning is a serious thing. It is never funny! No one should make jokes about it. I took my warning seriously and I will do my best to never let it happen again!

neesee

No, Ken, what you got was a "courtesy call", not a warning. We save the warnings for very special people.

Who moderates the moderators? That last little barb hurts my feelings!

neesee

People who are underweight have low blood pressure.

neesee

I'm o+ and my gluten-free son is o-

neesee

Thanks Kris. That's good to know. I can't read small print anymore with or without my glasses. I have no idea what color lipsticks I wear anymore. If it looks good enough, I use that one.

neesee

I'm confused. Is this what you ate? Open Original Shared Link Or was it this? Open Original Shared Link

Here's a little extra info. Open Original Shared Link

Did you get sick? Or does it just make you uneasy?

I feel kind of sorry for your wife. She matters too you know. Hopefully you can find a kinder gentler way to work things out.

For the record, occasionally I will bake a batch of(gluten) cookies for the family. So far, I haven't had a problem. And yes, I am a major reactor.

Good luck,

neesee

Ok i retested my malabsorption threw enterolab and got my results today and it shows my malabsorption is higher then last year. Has anyone had this happen or know what could be causing this. I know im not getting gluten from anything.

paula

I've read about this happening to others as well. I have a feeling these inconsistencies are the reason Dr. Fine hasn't published anything yet.

Try having a blood test through your Dr. You might get clearer picture of how you're doing on the diet that way.

neesee

I was diagnosed back in the dark ages. There was no internet and no local support group to go to for advice. Needless to say, I didn't think to replace anything! But something wonderful happened. I slowly got well anyhow.

My advice is to do what you feel comfortable with. I would get a new toaster and a new colander.

neesee

Wait till you have to have a prostate biopsy and get back to us on that

Little Miss Allergy-there are a variety of tests they can do, some, like bloodwork to check your horomone levels are non invasive. The pelvic ultrasound is kind of invasive (that is putting it mildly) but not that bad-having to have a full bladder is the worst part.

A pelvic ultrasound isn't invasive at all, unless you also get a trans-vaginal one. For that one, your bladder needs to be empty.

I think it could be all the water. At least for me it is. The last time I had one of these exams the diarrhea started before I even got to to office. I almost had to cancel. How do you keep a full bladder with diarrhea?

Celiac is a real pain sometimes.

neesee

DQB1*0201 (*0201) is in strong linkage disequilibrium with HLA-DQA1*0501 and HLA-DRB1*03, therefore, *0201 is almost always found in the DQ2.5 (A1:B1) genetically defined haplotype, or the DR3-DQ2 (DR-DQ) serologically defined haplotype. This beta chain allele shares stongest genetic linkage to coeliac disease, the beta chain product is one of three DQ beta chains (DQB1*0201, *0202, and *0302) that effectively present the disease causing gluten epitopes of Triticeae glutens

That is from wikipedia. What is says is DQB0201 is almost alwyas found with A0501- causing the celiac prone gene. Allele testing is more important if the peron has DQB0202, which lacks the A0501 part of the gene. DQB0202 can join up with the A0501 from another gene and form the complet celiac gene though. Two genes joining together to fight gluten.

DQB0202 and DQB0201 are identical in blood though, but not on a molecular level. DQB0202 can cause celiac on it's on. In Europe 4% of celiacs had only DQB0202 without the Allele a0501.

The scientific publications I read show definate gluten reaction with DQb0202 also on it's on, just not to the extent DQ0201 does(the celiac gene). The beta part of the gene is where the damage is being done. DQb0203 is a very rare gene.

Neesee,

you mentioned glutenwrangler...

he is double DQ1,5

sorry if I got too in depth for anyone

Hi Fedora, No your reading isn't to in depth for me to understand. I find it to be very interesting. Here's another article that's interesting too. Open Original Shared Link

I have no idea what Gluten Wrangler's genes are. He just said he was negative, but he did test with enterolab. He could still have that alpha gene. He wasn't tested for it. Enterolab only looked for the beta part. It could explain why some of the people here test negative, but still cannot tolerate gluten.

Oh I hear you about the stubborn relatives. Mine won't listen either! My brother says he's fine, and my dd's don't want any part of the diet. The oldest does have symptoms! Low cholesterol and belly sx's.

My son did listen and is gluten-free. His GI dr. said his biopsy was fine. His bowel just looked burned out in spots. Nothing to worry about. Ha! He has hasimoto's, elevated liver enzymes, kidney stones, high blood pressure, a heart condition, and a shunted brain cyst! And he grew to a grand total of 5'2 1/2. He's 28. my youngest.

Mom died from complications of type 1 diabetes and she had belly sx's as well as thyroid troubles. It's all there.

Good luck with your relatives. I hope you have better luck than I do.

neesee

Just to add... Dr. Peter Green also says that it's absolutely impossible to have Celiac if you don't have the genes. Yet, there are MANY folks here who DO have biopsy diagnosed celiac who do NOT have the genes. Even Fiddle-Faddle makes that statement.

I've seen Dr. Green speak, I have utmost respect for him. But, I don't think he's the ONLY doctor in the world who knows what he's talking about when it comes to Celiac.

In any case.... I wasn't trying to figure out whether or not I should "believe" the results from Enterolab. Rather, I was asking for help in discussing the results with my family members, who think that Celiac is nothing more than a "state of mind" - a random fluke in an individual.

According to prometheus, it's not impossible to have celiac with only DQA*0501. Something like this could account for the people here who don't seem to have any celiac genes yet do have celiac. Gluten Wrangler comes to mind.

Prometheus told Amooliakin ( over on celiac forums ) that she had half of a celiac gene. DQA*0501 and that while it was rare, it wasn't unheard of to develop celiac with this gene alone.

Anyhow Kris, I guess I misunderstood what you wanted to know. Sorry about that. You're a real nice person and I feel pretty bad to think you're upset with me

However, I'm not a fan of enterolab. Not until he publishes anyhow.

neesee

Didn't I read here on this board that European scientists recognize several genes as being "celiac genes," while in the US they only recognize 2?

At any rate, the US medical community is so far behind on celiac, I don't trust genetics as a way to really rule out celiac--or even rule it in, for that matter. I have seen too many posts here from people who did not have the so-called celiac genes who DID have biopsy-diagnosed celiac.

Fiddle-Faddle, I have to agree. There is so much more to be learned. At least the medical profession seems to be more interested in celiac and gluten sensitivity than in the past.

But I have to add, If I were to have my genetics tested, I would choose a more complete test than enterolab offers.

neesee

In all honesty, I don't think I would completely trust enterolab gene testing. They don't test for anything but the beta alleles. Kimball genetics tests for both the beta and the alpha genes. It does matter. You still don't know if you have a full celiac gene or not.

I asked enterolab why they didn't test for the alpha genes and this is their reply.

Dear Denise, Thank you for your correspondence. No, we do not test for the alpha DQ alleles. The reason behind this is that since we have been testing genetics and correlating them with our stool results for quite some time now, Dr. Fine is concluding that it actually does not make much difference at all what the Alpha allele shows. The percentage of individuals with Celiac who do not actually even have a Celiac gene is even much higher than originally thought, and Dr. Fine's impending publication should address this in much more detail. Sincerely, Phyllis Zermeno, RN, BSN Clinical Manager

Dr Peter Greene says you need both the alpha and the beta alleles to make DQ2.

If it were me, I would retest with Kimball.

Denise

NeeSee

Have you ever cut nightshades out of your diet? They have been implicated in joint and muscle pain. These include tomatoes,potatoes,eggplant and peppers. Also I would look into candida overgrowth as well.

I don't eat a lot of nightshades, so I don't think that's the problem. I do eat a lot of sugar however, and my blood sugar is now in the pre diebetic stage. I should cut out the sweets I guess. I really don't think it'll help the aches and pains, but then again you never know. It's worth a try.

neesee

I have miserable muscle and joint pain. It's gotton real bad for about the last 5 years or so. I have days I can barely walk around. I take a lot of ibuprophen just to get through the day. I have been truely gluten free for 20 years now. Even personal care products! I didn't hurt like this 20 years ago! I don't think it has anything to do with gluten at all! It may possibly from having celiac, but being gluten-free doesn't help it at all.

In the past 10 years, my dad died, my son had 3 brain surgeries, and my dh became a bad diabetic. Maybe that's the problem. I don't know. I am almost 54. Maybe it's just old age. lol

Being grouchy is not acceptable......even if I'm not feeling well!

Thanks to all of you for your patience.

neesee

yes.....I also was diagnosed with chronic gastritis along with celiac. I was told it was caused by multiple vitamin deficiencies.

Denise

Ursula.... I tried to send you a pm. I hope it went through. I don't think I could type it out again. It's long.

To all the rest of you, No, I'm not a troll, or at least that was not my intention. I do have scars from my celiac disease. I lost my ability to socialize because of my severe diarrhea. This is why I feel I could use a support group too.

I would love to explain my celiac to all of you, but my typing skills are as poor as my writing skills

I was end stage when I was diagnosed and a had a very long and difficult recovery. I now have horrible high pressure and I currently take diovan and toprol for it. The toprol is new and it's not agreeing with me. It make me moody weepy and sad.Last night even with my meds it spiked to 160 over 118. It's very uncomfortable for me. My neck feels like it could explode when it's this high. It kinda scares me.

neesee

I don't think that we need to have a general consensus as to what we call gluten. Does it really matter?

neesee, I would assume that you refer to gluten in a manner that your grandson could understand and most likely "rat poison" would be a little severe. How you choose to make reference, is your business. How others choose, would be their choice.

I would hate to see an insignificant topic become and unfriendly issue.

No, it doesn't really matter to me how you refer to gluten.

I'll admit it I'm stumped Expressing myself through my writing has never been one of my strengths. Put my flute in my hands and i'm good to go. I'm a musician not a writer. I'm sorry. I'm crying. I know you don't want me here. I just wanted to help the newbies to cope without so much anger.

Dh fed me those lines yesterday because I was crying then too.

sorry

neesee