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Old 10-25-2009, 10:29 AM #1
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Hello everyone.

My 24 yo daughter, who has returned home due to divorce and college, was diagnosed with Hashimoto's in 2006. Surgical removal of left lobe and is on replacement hormone meds.
Her new doctor has been testing her for everything and we have found intolerance to gluten/wheat/casein-cow milk/soy/maize-corn, which caused a new batch of tests Celiac Disease Comprehensive Panel -- Tissue Transglutaminase Antibody, IGA <3 U/mL (I gues she is negative??)
IMMUNOGLOBULIN A 515 H 81-463 mg/dL (this is high)


But that is it for blood I believe for Celiac Disease for the next one is Magnesium, RBC and IGF-1, then others for hormones and cortisol, etc.

I have her scheduled to meet with a gastro for the biopsy to determine the celiac. But now after being here, I see most blood works cover more areas than what she had done.
She works part time, attends classes full time and we don't know what is causing her problems. I don't even know where to begin?? We have been blaming hypo thyroid for all of her ills and poor care by her doctors. Now, this is something way different and new to us.
Is it adrenals? Thyroid? Gut? It seems as if her problems became worse during a very stressful separation/divorce, moving back home, beginning classes again. Could it just be the hashi's and stress?
Should I find a doctor for her that specializes in auto-immune disease? I have no idea what I am doing!
Any and all info - put in as simplest terms as possible for the noob - would be greatly appreciated. Her doctor now has a let's wait and see and her mother wants to get all the info yesterday! Thanks.
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Old 10-25-2009, 01:01 PM #2
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anti-tTG is the main celiac test used for screening these days, and when positive, it is a very good predictor that they'd find villous atrophy on biopsy. The test isn't perfect, though, and there are sometimes false negative results (some studies say as many as 20% of biopsy proven celiacs are seronegative). So, a negative result does not completely rule out celiac disease, defined by villous atrophy found on intestinal biopsy.

The reason they run total IgA is to make sure someone isn't IgA deficient (far below range, with <7 result), in which case they don't make enough IgA in general to get an accurate result on the test. She clearly isn't IgA deficient. Can't say I've ever seen an above range result before! I have no idea if that has any special meaning, or not.

You can definitely be gluten sensitive without having celiac disease. Many who are gluten sensitive do have other sensitivies, especially casein.

It is not a bad idea to consult with a GI, just to make sure there is nothing else wrong. Most GI's only concern themselves with biopsy proven celiac disease, and down play gluten sensitivity. This is changing though, with some of the big celiac experts now acknowledging you can have gluten sensitivity without having celiac disease. You could request the antigliadin IgA and IgG test, but one needs to be eating gluten for blood test and biopsy to be accurate. Do not start a gluten free diet if you want to pursue this further with a biopsy. If she had a positive result on the antigliadin antibodies, you might find a GI who would proceed to biopsy.

Here is a further explanation of the celiac tests...
http://jccglutenfree.googlepages.com/diagnostictesting
http://jccglutenfree.googlepages.com...ndstooltesting

Gluten sensitivity can affect mood (brain fog, depression, anxiety), and digestive health, so it is definitely worth trying a gluten free diet. But, it may be only part of the answer. Often times nutritional deficiency goes along with food sensitivity, so she may want to begin a well rounded vitamin regimen, for at least six months, to see if she feels any benefits from that. Perhaps a multivitamin, and a good B-complex like Country Life Coenymated B-complex, or Jarrow B-right. These both contain the active forms of B6 (P5P) and B12 (methylcobalamin) which can be important. Most people benefit from fish oil. Low zinc is associated with intestinal permeability. Most people are low in magnesium and vitamin D. It is generally suggested to add new supplements one at a time.

If you had other testing done that shows gluten/casein/ soy/corn sensitivity (what testing was that?) ... I'd just run with it.. and make the dietary changes.... if she is willing. This is a big commitment, and has to be as close to 100% as possible to be effective, so she has to be firmly behind the effort. Gluten, casein, corn and soy do seem to be the top food offenders, and this usually does suggest some underlying "leaky gut" situation. Removing the indicated foods, adding probiotics, adding fish oil and zinc, can all work toward healing the gut lining. B vitamins are important for mood and neurological health.

This is going to be a process as there is rarely any single magic answer, but often times food sensitivity and nutritional deficiency play a big role, and go undetected by our doctors. The thyroid issues can certainly cause big problems all on their own, and so many symptoms tend to overlap many conditions.

You may also want to read up on pyroluria to see if you think it might "fit". I mention it mostly because you say her problems became worse duing stressful times, and pyroluria is a stress related condition, that especially spirals out of control during stressful times. It is also associated with gluten/casein sensitivity, and deficiencies of B6 and zinc. However, I'm not completely clear on what all of her symptoms actually are. Most conditions worsen under stress, as well, but I thought this worth mentioning.
http://jccglutenfree.googlepages.com/pyroluria
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Last edited by jccgf; 10-25-2009 at 01:21 PM.
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happyisme09 (10-25-2009)
Old 10-25-2009, 01:18 PM #3
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I think you asked elsewhere whether gluten sensitivity is associated with Hashimoto's thyroid disease... yes, it is associated... and they are looking at whether it may actually be causitive.
http://jccglutenfree.googlepages.com...thyroiddisease

Celiac Disease is the only autoimmune disease with known cause (gluten) and cure (gluten free diet). There is some speculation that gluten sensitivity (and casein sensitivity) may be a trigger for developing other autoimmune disease, including Hashimoto's thyroid disease, T1DM, rheumatoid arthritis, MS and more. There are instances of people with other autoimmune diseases improving on a gluten free diet (sometimes casein free and other free diet), but it very much depends on the disease process.. and whether the damage caused is permanent or not.

This hypothesis is far from proven which could take decades, but yes... they are definitely looking at intestinal permeability and food sensitivity in regard to the role it might play in other autoimmune disease.

http://jccglutenfree.googlepages.com/zonulin
http://jccglutenfree.googlepages.com...oimmunedisease
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Old 10-25-2009, 01:28 PM #4
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Welcome to NeuroTalk.


You came to the right place to find support and information for helping your daughter. You're a good mom.

I hope you'll get to the bottom of the health issues soon and life will calm down for your daughter and you too.
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Old 10-25-2009, 03:18 PM #5
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Hey thanks everyone!! And thank you for the welcomes.

First, jccgf let me answer
Quote:
(what testing was that?)
the only thing I can see on the results page is this under the reference range heading that states after each test:
This test was performed using a kit that has not been approved or cleared by the FDA. The analytical performance characteristics of this test have been determined by Q**** Diagnostics Nichols Institute, San Juan Capsitrano. This test should not be used for diagnosis without confirmation by other medically established means.
Used for Wheat (GF4) IGG, Egg White (GF1) IGG, Soybean (F14) IGG, etc.

Her doctor left it up to her more or less. If she wanted the biopsy - to go ahead. To also just go ahead with the gluten free and casein free diet. He somehow managed to call the labs to have some other endomysial test run? I will be reading up on those explanations for sure! As for her supplements - I just grabbed a bunch!! Her Natrol Easy C's have the B6 and B12 in them. Nutri Silk caps are for her skin and hair. I also have some Just Once Food Based Calcium (that contains Magnesium as oxide, aspartate), Vit D as D3 cholecalciferol, Betaine HCl, stinging nettle, horsetail herb, and organic spirulina but not sure if she should take this.

Along with MY xtendlife Total Balance Women's Premium that has everything AND the kitchen sink! *until we get her the multi you suggest. And let's throw in some Vitamin D3 3000 IU, CoQ10 100mg, Essential Enzymes, Vite E 200IU, Cod Liver Oil 1000mg and some flora smart probiotics. She doesn't take each every day. She staggers them. The only additional zinc would be from the Vit C (zinc oxide) tablets or the NutriSilk (citrate) caps.
We have already begun to do the GFCF diet but it may change after she sees the gastro in November. Maybe she should stay with the gluten? But what if this doc says the biopsy isn't necessary? What to do?
Looks like I am going to be busy reading for sure! Thanks again and
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Old 10-25-2009, 03:39 PM #6
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Lightbulb

Just at first glance..

Don't count on the magnesium oxide to provide anything.
The amount of aspartate would be very small...the makers use
cheap, non absorbable mag ox because historically it was acceptable at one time. But recent studies show it is not appreciably absorbed.

The A in the cod liver oil may compete for absorption with the D.
One of the videos I linked to explains this...that A receptors have recently been found to block D absorption.

There is probably not much B12 in that combo product. A better dose would be 1000mcg/day.

Many of us use separate products for the important nutrients and combos for the rest.
When you are up for buying more:

Methylcobalamin 1000mcg/day or 5000mcg/day Jarrow, not expensive

Now D3, 5000mcg (this is a new dose that just came out) or the 2000mcg and take 2. not expensive

Zinc-- best form is monomethionine... called OptiZinc. (Source Naturals) not expensive.. one a day

Jarrow's B-right for the other B complex.

Magnesium glycinate, or other chelate as you choose.

L-glutamine for the GI lining

Vitamin C---I recommend sustained release or Ester C.. 500mg a day.

Many of us use iherb.com (or Vitacost.com) as they supply quality brands at about 40% the retail in local stores. iherb gives free shipping over $60.

Make sure she is getting a good amount of protein daily.
The blood proteins carry the thyroid hormone around the body.
Poor protein intake leads to low proteins everywhere. If she doesn't like meat etc, a good whey protein smoothie will substitute for it. Some whey protein powders are casein free.(Designer Whey is one example, and it has glutamine in it.)
You can use soy isolate if you choose, if she can tolerate that.
Adequate protein will improve the hair, as well.

These are just some ideas. I really prefer to use some of the more crucial supplements separately. Using the online discount suppliers allows for this freedom without much increase in expense.
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Old 10-25-2009, 03:50 PM #7
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Thank you again mrsD. Have you thought ever of opening a spa for the glutenally challenged?

I am copying the suggestions into her "health" folder now and can't wait to get shopping.
Proteins will be a challenge. She does eat a little bit of free range turkey or chicken. Ian's fish stiks *gluten free. But very little. She is more salads. Especially with all the weight she put on last year and trying to lose it.

I will just take over and finish the "junk" vities I bought and get her some serious supplementation! I do worry about synthetic and those that prevent others from being absorbed. But I really don't understand it at all.

But this helps soo much. Can you stand one more ?
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Old 10-25-2009, 03:58 PM #8
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Wink

There are ways to improve salads.... salmon is one.

I make salmon salads myself. There is Smart Balance peanut butter...not sure if it is GF tho.

I counsel people on drugs and supplements for all sorts of problems. I did GF for about 3 yrs, but then discovered my problem was FRUCTOSE.... so I eliminated that, and now do have some gluten now and then.

GF Tinkyada pasta I have found to be the best. It is from brown rice and you'd never know it was GF.

I leave the GF details to the experienced posters on this forum.
I just happened to have some time today online, so I was available to answer quickly. Next weekend I will be all tied up helping my son move into his first home.

The GF diet is basically whole foods, and is very healthy. Once you get used to it, it is not so bad. I missed bread and pizza alot, however.
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Old 10-25-2009, 04:08 PM #9
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Congratulations to your son on his first home!!

I was reading about fructose the other day and it's tie to glycation. But I don't have time to worry about my wrinkles, yet. Keeping that one nearby. Very interesting stuff.

Thanks for you help and kindness again. I really do appreciate it.
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Old 10-25-2009, 10:41 PM #10
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IgG food allergy testing remains controversial among mainstream allergy docs, but I've known many people who have gotten good results after removing the foods flagged by IgG food allergy testing. So, I would trust those results are meaningful of gluten sensitivity.

The anti-endomysial antibody is similar to the anti-tTG antibody test... in that a positive result would indicate a high probability of celiac disease (villous atrophy).

So long as it was ordered within a week or two of starting a gluten free diet, it will probably give a true result... but the antibodies can drop quickly.

Quote:
We have already begun to do the GFCF diet but it may change after she sees the gastro in November. Maybe she should stay with the gluten? But what if this doc says the biopsy isn't necessary? What to do?
You do have to be eating gluten for a biopsy to be accurate, so if you think you want to pursue that... she should keep eating gluten.

But... even if she had the biopsy and it was negative... a gluten free diet would be the smart way to go, considering she is gluten sensitive and symptomatic. Many people without celiac disease improve greatly on a gluten free diet.


How long till the GI appointment? Early November or late November?
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