Suspecting CD - Is a diagnosis worth it???

[aklap]

YEOW!!! The rider is more along the lines I was expecting. But 17k for healthing ins?!?!?!!? That's insane

I am re-doing some life insurance policies. Since I don't have an offical dx...I didn't even bring it up. I had to bring up my HBP stuff and my lack of medication to treat the the problem (or non existant problem currently). We'll see what happens.

Thanks for the eye openner!!
_________________
Al

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

[emilyallsz]

hi there!
[see posts from wheatfreepdx/and my post over in "my blood test came back negative" ]i really feel i might need a doc who knows what this disease is really all about- i really feel i have alot of symptoms/associated issues. not the least of which is the vulvadynia. you mentioned you knew some docs in the area>? i am on the cape....

[Noatak]

Hi emilyallsz,
The two doctors I would recommend for a more natural approach to solving medical problems are Dr. Vivian Varese of Acton, Mass. and a husband and wife team in Nashua, N.H. who have a great website at www.nashuanaturalmedicine.com. I believe her name is Christine Doherty.
My niece goes to her, I have not, and says she is amazing. She has CD herself (the doctor) so what more can you ask as far as background for this?
She is testing my niece and her 3 year old son for CD through gene testing.


I realize that these two are far from the Cape but if you cannot find a good doctor there, I know I would travel an hour and half to get answers from someone who will listen. If you need more information, ask away!

[Noatak]

Hi emilyallsz,
The two doctors I would recommend for a more natural approach to solving medical problems are Dr. Vivian Varese of Acton, Mass. and a husband and wife team in Nashua, N.H. who have a great website at www.nashuanaturalmedicine.com. I believe her name is Christine Doherty.
My niece goes to her, I have not, and says she is amazing. She has CD herself (the doctor) so what more can you ask as far as background for this?
She is testing my niece and her 3 year old son for CD through gene testing.


I realize that these two are far from the Cape but if you cannot find a good doctor there, I know I would travel an hour and half to get answers from someone who will listen. If you need more information, ask away!

[aklap]

bump
_________________
Al

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

[ostrich]

I told my doctor about my new diet yesterday. She seemed a little shocked, but perfectly fine with the change. She said "Good for you! I'm glad it's making you feel better" without even bringing up the need for an official diagnosis.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[emilyallsz]

i got a copy of my blood tests back today and the doc this time was a lot more understanding. he said they show negative but they are not 100% and agreed that yeah if you are off gluten ( I have been for maybe two months now) there is disagreement how long the antibodies would remain to show on a test. he seemed open to the idea of consuming gluten and taking the tests again. i did read in Dr. Green's book though that eating the gluten again would be before a biopsy. the doctor brought up that the biopsy is something that is still the definitive answer and something that could be done... but we both agreed although it is a minor procedure it is still of course a procedure! having never been admitted to the hospital for anything i don't take that lightly! not sure where to go from here....

i was able to find out the tests that were run adn get a copy. i am a bit disappointed that it doesn't look like i got the tTG but honestly I am unfamiliar with looking at these test results;

TEST RESULT REFERENCE

>ENDOMYSIAL IGA
GLIADIN ABS Negative Negative

> GLIADIN IGG AB 4.9 <=25.0 EU
> GLIADIN IGA AB 4.9 <=25.0 EU
>RETICULIN ABS Negative Negative [/i]

[emilyallsz]

noatak!

thanks for the info- i checked out the nashua naturopaths site and it was really informative. turns out my naturopath is friends with her so i think I am in good hands

[emilyallsz]

hi there

i still don't understand my test results- if anyone has any insight or experience I would be soooo greatful!

in the meantime i am working with a great naturopath who has always thought my various issues were food related. having had a confusing time with food challenges, i am now keeping a very detailed food/symptom diary so that we can determine exactly what it is-- i am still highly supsicious of gluten of course but as my naturopath says, that is a very restrictive diet so it will be best to find out as best we can (i know of people allergic to garlic, cinnamon, cumin etc -- although they don't have the various other conditions i do...)

in any case, i just had wheat/barley flour mix yesterday for the first time in probably a month or so (knowingly) and besides indigestion, tummy pain, nausea, i have had horrible itching in my bum! i think this is the wierdest thing yet... anyone else heard of????

[Noatak]

Emilyallsz.....glad you liked that site. If I didn't have a good doctor myself, I would go to her. As for your test results....it does not look like Celiac but if you weren't eating gluten beforehand, that could definitely skew the results.

I do not agree with the notion that the biopsy is a definitive answer for Celiac. Blunted or flattened villi happen at the end stage of this disease and there have been instances of people with CD having a negative on the biopsy. I still think the gene testing is the place to start as that can rule OUT CD if you don't have a marker. If you do and have huge tummy problems when gluten is ingested, I would trust my instincts and stay gluten free. Whether you have CD or GS, it really doesn't matter....you can't have gluten!

I also wish doctors would stop referring to this lifestyle as extremely restrictive...I totally disagree! Maybe 15 years ago but not today. The only thing it restricts is eating a poor diet. If they keep saying that to people before a diagnosis is made, this will set up a mental block with patients and they will be miserable even before they get started!

As far as the itching is concerned....not so weird. If you ingest food that is poison to your body, at some point it will leave the body and irritate everything in it's path. Your body is telling you something here....don't doubt your intuition!

[aklap]

bump up for Anette
_________________
Al

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

[aklap]

back to the top
_________________
Al

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

[jherara]

I have some follow-up questions to the thread regarding Celiac Diagnosis.

My primary care provider suspected CD/wheat allergy as my IgG came back positive, BUT she recommended that I NOT be biopsied as she felt it would be too invasive and that the results (i.e. getting healthier) from going wheat free would be the same.

I considered going with the biopsy b/c I found out that biopsies can be used to track the healing process, BUT...

I went with her decision for the following reasons:

1. I had seen 2 gastroenterologists in one year and both were fairly idiotic. Doc #1 did an upper endoscopy, but failed to do a biopsy last October b/c he didn't "see" anything wrong and didn't want to risk internal bleeding b/c I also have a Potassium and Vitamin K deficiency with former bruising. Doc #2 did a colonoscopy with biopsies of large intestine, but failed to recognize the difference between "colitis from procedure" and "colitis from an other source." In effect, although the colitis was seen in the same quadrant of my abdomen (upper right side by belly button) where I was having pain for months, he let it slide that the colitis could be from the procedure.

2. I had EnteroLabs test me after the bloodwork came back positive and they diagnosed me with predisposition to gluten sensitivity (based on my gene test that showed two copies of the gene for gluten sensitivity) with positive wheat allergy. Now, they also noted that the genes typically related to celiac disease weren't there? Which I still don't understand, b/c I went to CSA.org and checked their information and the copy they listed for me is in their range.

3. That if you have two copies of the gluten sensitivity gene that it will do or will cause by opening up the intestine to parasites/yeast/et cetera the same damage.

4. I also read a full report on one of the major hospital forums where a patient was biopsied 4 times and came back negative, but then biopsied again a month later and came back positive (i.e. delayed sign of damage).

Current issues:

1. Has anyone had problems b/c they weren't officially diagnosed while yet being treated by doctors as if they were?
The reason I'm asking this is my allergist agreed with both the wheat allergy with gluten sensitivity and that my intestinal damage and now systemic candidiasis (which I also have) were likely the result of the wheat, but we were discussing gluten concerns the other day and although he said he wants me to stick with the gluten-free diet, he made a comment (i.e. people who have been 'officially' diagnosed) on the phone the other day which threw me for a loop as he and my PCP are treating me as if I am (i.e. celiac on top of the rest of my problems). I had asked at my initial consult if he thought not having the biopsy was a good idea and he seemed to think it was given my medical history and my extremely poor health quality. BUT, my concern is that other doctors may have that same attitude (i.e. you weren't biopsied so...).

2. ANY tax write-offs for food? I've had to restrict gluten (from oats, wheat, rye, et cetera just like with celiac), soy, milk (casein), and now sugar (b/c of the candidiasis) and possibly starchy foods--the jury appears to still be out on that until I hear back from my allergist and speak with a nutritionist next week. If that happens, I'll also have to remove: white rice, potatoes, corn, and other simple carb foods that become sugar in the gut.
It was one of the admins at allergygrocer advised me of the tax write-off for celiac, but she said she wasn't sure if I could have it given the lack of an "official" diagnosis. Anyone know what the link is for the IRS page that states what is and is not deductible for food? I've searched, but I haven't found it yet. Also, anyone know if they deduct for celiac or is it for a wide spectrum of health problems? My food bills has skyrocketed with all of these dietary changes, especially now that they want me to rotate the meals I eat each day to keep from causing too much of each food's proteins from leaking into my bloodstream with the rest of the toxins causing allergic reactions.
3. Candidiasis. As the Candida has damaged my gut and bowel, does anyone know if I were to go with a biopsy at this point and it came back positive whether there's any way to tell if it's positive from the candida or positive damage from the previous gluten?

Anywho, that's it. Any help appreciated. ALSO, I'm losing a TON of weight. Anyone have any ideas? I was 119 until 08/06 when I dropped to 112 with the dietary changes and travelling long distance to one my specialists by train. Then 110 by 09/22. As of today, I'm 106. I'm eating. I'm eating healthier than I was before all of the dietary restrictions, but I can't seem to gain ANY weight. PLEASE, if anyone knows of a way to "fatten up" I'd love to hear it.

J.
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J.

[Noatak]

Hello jherara,
I'll try to answer your questions as best I can......I was officially diagnosed through bloodwork and chose not to have the added test (biopsy) because I was so sick at the time and losing 1 pound per day. I weighed 100 pounds and could not afford to lose any more. As I suspected CD, I had the bloodwork done and immediately went GF. The bloodwork came back very positive on all counts and my response to the GF lifestyle was amazing. So I know I have CD and if any HMO doctors think that Dx is not good enough, the hell with them. My present doctor did the bloodwork and she agree's with me so I have no experience with those that get snotty and want to see a pretty little picture of blunted villi. The weight loss I experienced was proof enough.

You say you have vitamin deficiencies that make a biopsy dangerous? Your doctor sounds smart and could it be that these deficiencies are another clue that you do have full blown CD? Trust your inner instincts and test results, so far, and stay GF. None of your other problems will go away if you eat gluten when you are not supposed to.

The tax question I researched and here is the deal.....you have to price the non-GF equivalent of what you are buying and can only deduct the difference between the two. You can only deduct Gf foods that are specifically for a Celiac diet.....no deduction for fruits, veggies or anything else that doesn't fall into the GF category. You also have to keep your receipts, obviously, in case of an audit. You are more likely to be audited for non-mainstream deductions. It is a pain in the neck and only you can decide if the whole thing is worth the effort. Medical deductions have to hit at least 7 1/2% of adjusted gross income before you can even claim them.
Basically, you have to have surgery and pay for it before Uncle Sam will give you a break! I do not know your situation though, so maybe you will have spent enough to deduct.

I, too, had systemic Candida problems for years or so I thought. I am now wondering if it was actually CD that had kicked in. You will do better on the candida diet as it cuts out many carbs but can mask CD. Personally, I would stick to the GF diet and try to get that going as it would help a candida problem if you attack the root cause first....CD. The weight loss would tie in with CD and the longer you remain absolutely GF, the more your gut will heal and enable you to gain weight. FYI, I was 100 pounds a year a half ago and now am up to a "fat" 114! It took about 5 months before I started to gain weight in earnest. I am now watching my weight....that's all new to me!

To gain weight, I would recommend all those yummy GF goodies but if you do have a true candida problem also, the sugar in the stuff will aggravate the problem. I always found sugar to be worse than yeast in making that condition worse. Peanutbutter is dense calorie-wise or nut butters in general. I still think you need to stay GF first and let your gut heal. Then the weight will come. Good luck to you and I hope I made myself clear. Any concerns or questions, please feel free to ask!

[jherara]

Thanks for the info, Noatak! And yes, your explainations were very clear and unbelievably as this may sound between the diet changes and the trips to WI, which can be taken into account toward medical, I might actually have enough to meet the deduction requirements next year for taxes.

As for the GF and systemic candidiasis: my allergist does believe that the SC is the result of the gluten and the allergies to milk and soy (i.e. stomach damage) in combination with stress/antibiotic usage - I think I just took his statement regarding those who have been biopsied and diagnosed CD the wrong way that day. I've been sticking to the WF/GF diet. I thought it was a difficult diet, but I've found it's not have as bad as trying to cut sugar--that has been a nightmare in comparision.

It's really funny, when I was told no more wheat or gluten foods I thought I'd never get used to it b/c the smell of wheat makes me feel like I'm starving and gives me a temporary high. OMG! Sugar is sooooo much worse.

But, I found something called "stevia" that is supposed to be a great herbal sweetner, but without all of the "candida feast frenzy" that normal sugar produces. Haven't tried it yet, but it looks promising.

Also, for anyone out there that is trying ways to gain, Noatak's right again, nut butters are supposed to be good protein adders. My allergist conducted a phone consultation the other day and gave me the 411 on simple carbs and nut butters. He's letting me eat simple carbs (small amounts and moderation of things like potatoes and white rice) as I have so many foods that I can't eat. The nice part is that he also recommended that I try nut shakes for protein and weight gain. I have problems with peanuts and lupine flour too, but I tried almond butter with a frozen cherries/rice milk shake....YUMMMY!!

Still wavering between 106-110, but I also just bought the new George Foreman G5 grill with the interchangeable plates...I'm thinking that will definitely help too.
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J.