This is the sorry truth. GI's rarely have appreciation for gluten sensitivity that doesn't present with villous atrophy. In their defense, I guess, gluten related neurological disease in the absence of celiac disease is NEWLY recognized within just the past ten years or so. But, in my experience, the GI chose to ignore any of the new research I called to her attention. No defense for that.

I've decided our doctors are very well trained for critical/emergency care, surgery, and simple conditions like strep throat, ear infections, etc. Both of my parent's were saved countless times in emergency care settings. (Although, we have more than our fair share of health care horror stories, too!) Our doctors aren't quite so good when it comes to treating chronic health conditions. When my daughter presented with seizures at age 12... they never looked for any underlying cause. It is easier for them to just prescribe anti-epileptic drugs, which may or may not work. Unfortunately, sometimes a vitamin or diet change is all that is really needed.... but they don't bother to look for vitamin deficiencies or food sensitivities.

I also keep preaching, to myself, I guess, that neurologists need to take ownership of gluten related neurological disease. They keep passing us off to the GI's because they think that GI's "own" celiac disease, but the GI's don't know diddly about gluten related neurological disease, especially when it doesn't meet the diagnostic criteria for celiac disease.

My young adult daughter is still eating gluten because her GI insisted her positive antigliadin antibodies meant nothing. The GI also ignored her lymphocytic gastritis found during biopsy, which is indeed suggestive of gluten sensitivity, but not diagnostic of celiac disease. And at age 16, when the diagnostic testing was done on her... my daughter opted to believe that a doctor "with all those years of medical school" knew better than her mother... . And of course, at 16 she wanted to eat pizza. At 23, she still wants to eat gluten, and just suffer with the chronic health conditions that are now "normal" to her.

In any case, I also feel my family has mostly been self diagnosed thanks to the Internet and forums like these. On occasion, a few doctors did something right, but mostly they fell short. Here is our story: http://jccglutenfree.googlepages.com/thestory

BTW... you may find relief in your other allergies once gluten has been out of your system for a while. I have! I used to have very significant seasonal allergies and frequent sinus infections. That all improved significantly once I removed gluten. It goes to an allergy load theory... that everything is sort of cumulative... and if you remove the BIG allergen... the others won't be so overwhelming. My son did the allergy shots when he was a child, and they did work for him. He was miserably allergic to trees, weeds, grasses, molds.

Glad to hear you seem to be improving. Keep an eye out for dairy, too. Cow's milk sensitivity is associated with autoimmune disease and neurological symptoms as well, although far less studied. But...studies do show that up to 40-50% of those with gluten sensitivity, also have casein sensitivity.

Thankfully, you don't need a doctor's prescription or permission to make dietary changes. Whew!

Hello everyone, A brief History:
Recently came back with adult daughter's (24 yo) blood work. She was diagnosed with Hashimoto's in 2006, had left lobe removed and put on synthroid. Taken off synthroid - put on levothyroxin and problems began.
Up and down she went with the dosages. Found herself separated from her husband right after starting full-time classes at university and having to move out of her home.
Stressful doesn't begin to describe.
Then things began to happen.
Depression (on wellbutrin and another anti-depressant for months), weight gain of over 30 pounds in a very short time, mood swings that you would not believe.

But during this "state" she produced grades to win her a scholarship, a Who's Who honor, and was approached to become an asst manager of a high end purse/leather goods store, which she had to turn down for she was moving 900 miles Back Home!

Now to present a new doctor has tested her for food intolerances and found them to include: gluten/maize-corn/soybean/casein-cow milk/wheat.
Ran the Celiac Disease Comprehensive Panel (which only has two tests)

Tissue Transglutaminase Antibody, IGA <3 U/mL (negative????)
IMMUNOGLOBULIN A 515 H 81-463 mg/dL (high)

I made an appt to see a gastro after hearing a biopsy is the conclusive test to run for Celiac. But who else? Her doc has a wait and see attitude. She wants to know now. As much as possible. We have begun the gluten free - casein free while watching soy, corn, etc.

I am confused and not sure what I our next test or move should be.

The main thing I am concerned with is her severe constipation issues. She had none upon moving back in May, 09. Could it all just be stress? Adrenals?? She has managed to lose the 20 pounds she packed on and is trying to lose more. She rides her bike constantly, always in her books, and drives over an hour to work. She must keep this job to stay insured!!
Help? Any information will be appreciated and I thank you so much.

I can understand the frustration with the levothyroxine.

It may be that going back on Synthroid might help. But also people with loss of thyroid from surgery tend to have problems afterword.

I know for myself, my left thyroid does not function 100%, from radio uptake testing. It is dead for some reason, infection or injury (I had receive some child abuse when young).
The part that remains can take up the slack. But I find when stressed, esp cold weather, I have about 2 wks of sluggish, depressed times. I have to wear leg warmers in winter sometimes.

T4 in levothyroxine supplementation is not the active form for the body to use. It has to be converted. Some people cannot do this efficiently. Zinc and Selenium are cofactors for this process.
If one is low in either, there can be problems with getting enough T3 for stressful times. Physical exertion, surgeries, cold exposure, illness are some stressors.

Also make sure she is taking it on an empty stomach....no food for at least an hour after. No calcium or other minerals at the same time (no milk, etc). Absorption from the GI tract is very sensitive and can be disrupted by any food/fiber present or minerals like calcium or iron etc.

In my years dispensing drugs, I have had many people who HATE Synthroid too... one had a reaction during surgery even blaming that brand. So it might not be the brand she is using, at all.
I use the generic Mylan. I am still on 75mcg and have been stable for several years now. But I do feel the onset of winter, painfully. My TSH remains at 2.0 or just below with every test.

People with gluten intolerance and other food intolerances may have an inflamed GI tract which may be making absorption erratic. Once the offending foods are removed, then things might stablize.

The severe constipation I have seen in patients with thyroidectomies.
It is a sign of severe hypothyroid functioning. This kind of thing, and including hair loss or orange skin pigmentation (which I had on my palms and feet) are signs that low thyroid is still present. You can broach and request some T3 (Cytomel) in this case. Some doctors will not give it, however. The natural thyroid is now unavailable thanks to our FDA and causing quite a problem with the millions who favor it over synthetic levothyroxine.

Thank you so much MrsD!
The new doctor she is seeing has put her back on synthroid (0.075 mg) and introduced cytomel (5mcg-twice a day). She sets an alarm in the am before getting up to take.
She is still losing alot of hair. I need to find the magnesium citrate doc ordered for the constipation, although he said let's try the GF diet and see if this takes care of it before getting the magnesium. She is like "uh, doc it's been weeks...unless that diet works overnight - I believe I will try the magnesium right away."

Bloods taken 09/25/09 claim a T4, FREE 0.9 0.8-1.8 ng/dL

TSH, 3RD GENERATION 0.09 L mIU/L

T3, FREE 276 230-420 pg/dL

The celiac and other blood tests were drawn on 10/15/09 and I wish he had run another batch of the T4 FREE, T3 FREE and TSH. But he did not.
He is going to discover exactly what is going on with this young woman, of which I am truly grateful - I mean, finally!!

But in the meantime, would the biopsy hurt? Should I get an endo in on the mix of things? Nutritionist? Is there an ADRENAL DOC in the house?

I am fairly new to the whole Hashimoto's deal - I thought with her surgery and scripts she was cured! WRONG! Now this.
A one stop doc is what we need. But what is the problem here? Thyroid? Stress? Adrenals? Digestive disorder? Bad luck?
She has just recently begun complaining of headaches, too. (An mri of the pituitary showed no adenoma) She runs very warm all of the time. (Which is a bit of a drag seeing that her mom is always freezing!)

Is celiac due to the thyroid? Or is thyroid probs due to celiac?

If you think the stress of the biopsy is too much for now, you could just postpone it, and go gluten free and see if that helps.

Sometimes going gluten free fixes things very quickly.

I do think she should take some magnesium ...maybe not a laxative dose, because most people are low in this anyway!

I have a magnesium thread here:
http://neurotalk.psychcentral.com/showthread.php?t=1138
for ideas.

Just over the RDA may give a little laxative help. If you go too high the resulting diarrhea may deplete MORE things!
So people usually start low and increase slowly until they start getting loose.

Once some of the inflammation goes down by going GF, then the other intolerances may stop leaking thru, and go away. No guarantees tho.

With all this complex stuff going on she may also be low in Vit D and B12. Low D affects the immune system and many other issues.
We have some good vids now on YouTube:
This thread has 3 links to videos on the newest:
http://neurotalk.psychcentral.com/sh...255#post582255

Malabsorption happens when there is gluten intolerance. Then a cascade happens with poor absorption of everything else.
I'd get some blood testing for Vit D levels. Fixing that may help alot.

She may not be absorbing zinc. Low zinc causes hair loss.
There are many dominoes to fall when one system goes wonkey!

saying thank you doesn't even begin to convey my feelings mrsd

Just watching her trying to cope is what put me into high gear and this information is sooo very helpful. Calming too!

Vit D, 25-OH, Total 30 20-100 ng/mL

Vit D, 25-OH, D3 30 ng/mL

Vit D, 25-OH, D2 <4

He has her taking 3000 to 4000 IU of Vit D3 daily.

The zinc issue, I will her bring this up to her doctor.

Is there one definitive blood test that could be run to find as many crucial deficiencies as possible, in people with problems such as food allergies, gluten intolerance, etc? It seems he takes one series of tests, finds something than orders more. Why not nip it in the bud, so to speak?
Since vitamin and mineral deficiencies tend to be the norm why not run as many all at once?

Which vitamin/minerals should be checked right out the gate?

Make sure you take D3, in a gel cap type form, not dry powder.

I think 4000IUs would be a good start, retest in 3-4 months.

There are no really complete testing instruments at regular doctors.
There is a Spectra Cell, alternative place. But at this point, the major issues are Vit D, B12, zinc, magnesium, etc.
She could do a B-50 on her own.

Many serum tests are not accurate. They will show very highs or very lows as warning, but many in between values don't reflect much. The Spectra Cell testing tests intracellular red blood cells.
http://www.spectracell.com/micronutr...itional-panel/

You know looking at that panel reminded me.... many gluten intolerant people do well on l-glutamine supplements. Much of the glutamine we eat stays right in the GI tract. Human breast milk is very high in glutamine, to develop the baby's GI tract to prepare it for solid foods. Some doctors give this OTC amino acid as a support for GI inflammation. It might work some for your daughter as well.

Cara should be along soon, with her more experienced opinions.
I will defer to her.

Considering the bulk of my family's significant health problems have come down to food sensitivity and nutritional deficieny... boy do I wish nutritional testing is what they did at annual physicals. Even then, blood levels don't always tell the whole story, lab ranges are disputable, etc.

Many of us go through this long path of uncovering deficiencies one by one. In my family's case, we've had deficiencies of B12, B6, zinc, and vitamin D. That may not be complete... only what we know about. Much wiser to look at everything right out of the gate. Here is a start, at least:

From
JAMES LEMKIN,ND, CNS
http://www.pioneernutritional.com/pd...rticle7.04.pdf

Include both copper and zinc, because apparently the ratio between the two is important.