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Member Since 17 Apr 2004
Offline Last Active Today, 02:58 PM

#628002 Low Total Igg--What Does This Mean?

Posted by on 31 July 2010 - 02:01 AM

If the kids that have low IGA and IGG are continueing to have issues with D and other possible celiac related issues I would strongly advise going ahead and giving the diet a good strict try. Those low values could very well cause a false negative in testing for celiac, IMHO, and the diet won't hurt them. It may not help all their issues but if it relieves the tummy issues and helps with growth it certainly won't hurt.
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#627129 Want To Cry-So Frustrated!

Posted by on 28 July 2010 - 03:51 AM

"I cut out gluten for the last week or so and definitely feel so much better! My poo has become brown again (albeit still floating and poorly formed) and I have more energy. But now I've been told my blood work is negative for celiacs or malabsorption, I feel like a fraud doing it, cutting gluten out I mean, as there is no rhyme or reason why I should. I guess o probably shouldn't cut it out now he's put me on these meds too?"

I'm so sorry your doctor is so clueless. Please continue on the diet. Many of us do have issues with depression and anxiety due to celiac's impact on the brain. It is up to you but you may want to hold off on the meds until you can see if the diet helps. False negatives on both blood and biopsy are not uncommon and can make it really hard for some of us to get diagnosed. Since you were feeling so much better on the diet stick with it, your body knows the answer.
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#626845 Elimination Diet - Help!

Posted by on 27 July 2010 - 03:38 AM

Thanks so much for your input everyone.

I have been able to start a modified elimination diet. I was able to taper off of green tea (albeit with headaches when I finally quit; I think I'm really sensitive to caffeine) Now, I'm only eating: sunflower seeds, tuna, quinoa, sweet potatos, kale, bananas, and olive oil and sea salt. So far, so good. My GI symptoms have resolved. I'm hoping my diet will make a difference in my neurological symptoms.

And, the best part is that after a rocky start, my cravings have disappeared (at least, for now). I feel free! Free!

P.S.: A friend who is certified in TCM suggested that a good option for vegetarians would be mung beans, which would provide good protein and are still easy to digest. I remembered that my inlaws in India feed mashed-up mung beans to infants. I decided to go with tuna instead though since it's more filling.

Glad to hear that your feeling better. When you are ready to start adding things back in be sure to add an item in for a full week, in it's pure form, before you decide that you can tolerate it. It can take up to a week for a reaction to occur with intolerances. I hope your progress continues well.
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#626844 Got The Diagnosis-Finally

Posted by on 27 July 2010 - 03:34 AM

Welcome. I hope you heal quickly. Ask any question you need to and read as much as you can. We sometimes have some ups and downs at first, hang in there if you do.
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#626767 Beating Myself Up Today

Posted by on 26 July 2010 - 03:55 PM

Everyone has regrets. It doesn't do any good to dwell on things you can't change all it will do is make you depressed and make others not want to be around you. You can't change the past but you can mold the future. Concentrate on what is ahead of you not behind. When we walk looking backwards we just keep tripping over every little rock.
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#626762 Need To Find A Dentist

Posted by on 26 July 2010 - 03:34 PM

Gum issues can be due to inflammation so it is not surprising that your issues there have improved. They have for me also. I did 'interviews' when I was looking for a dentist I simply went in to talk to them before I made an appointment. If they were clueless I simply moved on. I have had a couple that were knowledgeable about celiac, one was so paranoid about glutening me she even checked the cotton balls. LOL Unfortunately she was a lousy dentist so I moved on and have crowns that will need to be redone. My dentist now is great, he didn't know much about celiac when I first saw him but he was quite willing to learn. Much of what they use is safe anyway but the flavoring in the tooth polish and flavoring in the numbing gel used before they give you a needle should be checked.
If you are fearful of dentists there are also sedation dentists who if you need a lot of work can give you oral sedation. Mine now can't legally do that but he was fine with my getting something from my doctor to self sedate when I had to have 5 teeth pulled in one sitting. Going into the dentist after years of not going was one of the best things I ever did for myself. Sometimes we don't realize how much pain we are in until its gone. Good for you for getting yourself in there. Just ask questions first and you will be fine. Dentists see lots of folks that haven't been in years, they won't chastise you for it.
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#626451 Visually Most Repulsive Gluteny Food

Posted by on 25 July 2010 - 10:31 AM

For me it is the little frosted mini wheat guys dancing around saying how your kids will think better in school after eating them.
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#626423 Reaction To Wheat Protein In My Hairspray?

Posted by on 25 July 2010 - 06:36 AM

I may have spoke too soon. I just heard that vitamin E may be wheat derived. Is that true?

Yes it is, it can also be soy derived which is also an issue for me. If the tocepheral is D-tocepheral it is not derived from either soy or wheat. That's what I look for in supplements and topicals.
Garneir makes some good safe products, I use them for skin and hair care but do read the labels.
Suave and Dove supposedly are good at labeling for gluten ingredients also. If you like organics you might want to look into Giovanni, I haven't used them in a while so can't say for sure they are okay. Shikai is another brand I often use.
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#626420 I Need Some Help With This One Y'all

Posted by on 25 July 2010 - 06:29 AM

As someone who has been fighting serious agoraphobis now for a year and a half I have to agree with the little baby steps at first. That's how I have come along the best. Another thing you may want to consider is asking your doctor if it is okay to take a half a valium before you do something that has brought these attacks on. That's called propholactic (sp) use and is how I have been able to go back to college and now most days I can either go without it or only take a quarter tab before I leave for class.
I take alprazolam and when I first started this fight back into the world my doctor told me to take half a one with me (in the script bottle of course) and when the attack would start to put it under my tongue. It would then go very quickly into the bloodstream and directly to the brain. Please ask your doctor if the valium would work the same way before you try it and be aware it will taste awful.
Also have you made sure the valium your taking is gluten free? Here one dentist kept giving me the generic form, or tryed to anyway, and it wasn't gluten-free. Only the name brand was but it was very expensive. That's why my shrink uses the alprazolam for me, in that case the name brand, Xanax is not gluten free but the generic is. If you have gluten issues the Valium may help with the symptoms when you take it but if it is a form that is not gluten free it will keep the process going.
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#626230 Label Says Wheat But No Reaction?

Posted by on 24 July 2010 - 03:22 AM

I am a firm believer that Celiac can go into remission and then appear when you let you guard down. So please choose carefully. ;)

This is found in some young people and doctors call it the 'Honeymoon Effect' and it is why they used to think kids would outgrow celiac. However, and the however is a biggie, they now know that celiac can not be 'outgrown'. The symptoms may lessen but damage is still being done. GI symptoms may seem to resolve but the autoimmune attack will continue sometimes working on different organs like the brain and liver. IMHO playing with not being gluten free after a firm diagnosis is playing with fire. Eventually you will get burned and when you do it may be in a way you can't go back from, like lymphoma.
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#626229 Really Interesting Results From Avoiding Gluten

Posted by on 24 July 2010 - 03:12 AM

The villious atrophy is the gold standard for celiac diagnosis, you are diagnosed no matter what the test results say. As for the little ones, I do wish you had their blood tested before going gluten free. They both clearly have have had positive results with the diet and slip ups have shown the issues returning. Talk to your ped and let the ped know that you have been diagnosed. The ped may want them to do a gluten challenge for the blood testing but the chance of a false negative with kids is pretty high even on a full gluten diet. If you do have them tested I would get them back on the diet no matter what the results.
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#626224 Wait, What? Can A Doctor Suggest Celiac Base On This?

Posted by on 24 July 2010 - 02:54 AM

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

That was posted in this thread

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#626034 Wait, What? Can A Doctor Suggest Celiac Base On This?

Posted by on 23 July 2010 - 11:03 AM

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)
Endomysial Antibody (IGA) - negative
Immuoglobulin A 381 (81-463)

Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.


Immuoglobulin A 381 (81-463)

This is your total IGA. That is in normal ranges which means if your original tests at diagnosis showed an elevated IGA in the celiac tests then yes that would be diagnostic. That the numbers have gone down to normal levels would show that you are doing well on the diet.
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#625483 News Story: "gluten Free" Foods May Be Contaminated

Posted by on 21 July 2010 - 09:26 AM

That study just confirmed what I already knew. I am pretty reactive.

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#624597 Elimination Diet - Help!

Posted by on 17 July 2010 - 03:18 AM

I am going to advise you to find an allergist who will guide you through the process. When calling ask if they help with elimination diets as not all do and you don't want to waste your money and time with appointments with ones who won't. The allergist will take an history of what you diet typically includes and will give you the best starting point for you. The starting point will be designed so that you have the nutritional and caloric needs fulfilled. It is not easy to do one on your own. After a week or two on the prescribed diet you will begin adding stuff back in for a week at a time in single ingredient form. It really is the best way to go although it is a process. The allergist will have you call the office and report your progress on a weekly basis and mine had me call and report any adverse reactions immediately.
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