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Afraid Yet Optimistic, For My Husband


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38 replies to this topic

#16 nicoleashley

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Posted 07 November 2012 - 04:49 PM

Well we got a voicemail from the doctors office today that said the bloodwork was NEGATIVE. So, yes I should be happy but why do I feel let down? I told my husband "I guess you can eat bread" but he actually WANTS to remain gluten free and try it for a while and see how he feels. We have a follow up appointment on december 4th, so at that time I am going to ask the doctor about getting him tested for more food allergies because maybe we are on to something. Maybe it's not celiacs but maybe there are food allergies or triggers that we can try to pinpoint.
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#17 nicoleashley

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Posted 07 November 2012 - 06:29 PM

"Dental enamel problems stemming from celiac disease involve permanent dentition and include tooth discoloration—white, yellow, or brown spots on the teeth—poor enamel formation, pitting or banding of teeth, and mottled or translucent-looking teeth. The imperfections are symmetrical and often appear on the incisors and molars."

omg, I read this and it's like another piece of the puzzle. My husband doesn't drink coffee or use tobacco products, yet his teeth have yellow and brown spots/streaks on them that he has had since I've known him. They do NOT respond to whitening products and our dentist told him a few years ago that some people have "that type of enamel" and there weren't any whitening products that would work, the only thing would be for veneers or bonding. (which we've discussed but other expenses always take priority).

I feel like this is the PERFECT diagnosis, and it really would be better than some of the alternative diagnosis. Autoimmune diseases would require immonusuppresents which can cause so many other problems and make you at risk for infections. I would much rather remove gluten from our diet than have to take pills. And I hate to feel so crazy. I mean I know there is something wrong, his physical symptoms, the inflammation seen on the endoscopy and abnormal biopsy, and you can see his joints in his hands when they get red and inflamed.


I am a registered nurse, but I am not the type of nurse who thinks that I have every disease I read about. I am usually the type of person to brush off a problem and say "oh it's nothing, just move on". I worked in Emergency Medicine for 6 years and now I work critical care, so yes I do see a lot of things and I don't want to let something go that is going to cause my husband to be debilitated later in life. Could this still be a gluten issue or should I be looking at other issues? Should we try to hunt down a specialist in gainsville or orlando? Gainsville has a teaching hospital, but I just hate to subject the poor guy to more tests.

I have talked some of my coworkers ears off the past few days with all of this going on, and picked the brains of a few of the physicians. But we are a small town community hospital and these docs all pretty much don't know a lot about these sorts of things. And not all of the physicans are really 'talkative'. There are a few friendly ones that heard me talking about it and gave a few encouraging words or a little bit of info, but nothing that makes me feel any better about any of this.

Sorry for rambling, I am just so frustrated, I thought we might finally have an answer. The nurse on the phone sounded so cheery when she left her message that the blood test were negative, but I am left wondering, what exactly does the biopsy say? What kind of inflammation is it and what else could cause it????
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#18 GFinDC

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Posted 07 November 2012 - 06:41 PM

..
It will help you find hidden gluten (things that you might think couldn't possibly have gluten like red licorice, soy sauce, seemingly plain things flavored with MALT (barley)) another food intolerance. (this may resolve after the gut heals on a gluten free diet)
...


Ooops, I agree with everything 100%, except the barley/malt part. Just the phrasing makes it sound like barley may not be a problem later. But it will be since it is one of the 3 grains that celiacs react to. I know you know this and it is just a finger/brain fart commnuication typing issue (like I get all the time). Just wanted to clarify for the newbie. :)

Tinkyada pasta may be a good choice. It is not too expensive and holds up well. Store bought corn meal mixes usually have wheat flour/gluten in them. So watch out for those.

Here's a thread on how to make gluten-free microwave buns or muffins. Quick and easy 2 minutes or less.

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

OK, I just saw your latest update Nicole. The testing is not perfect, so people can have celiac without "passing" the tests. It is not real unusual. There is also NCGI which has no tests right now. NCGI can cause severe GI symptoms also. The only test for NCGI are to stop eating gluten and see if there is improvement. Did hubby get good marks on his vitamins and minerals? If those vitamin levels improve after being gluten-free for 6 months then that is a good indication he shouldn't be eating gluten.

Non celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#19 nicoleashley

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Posted 07 November 2012 - 06:45 PM

I knew what as meant, I mean I understand that malt comes from barley, which is a gluten containing grain. :)
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#20 imjustgrandma

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Posted 07 November 2012 - 08:19 PM

Be aware there are false negatives to the tests. Gluten free is not going to hurt him, so try it. Give it at least a month, not a couple days.

Also, you may be very interested to watch the link I have provided.

TEDxAustin Robyn O'Brien 2011 - YouTube


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Good Luck
P.S. My husband is also Celiac and Diabetic. He was sick for a long time also.
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#21 AandGsmomma

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Posted 07 November 2012 - 09:37 PM

Just because the blood work was negative doesnt mean he is not celiac. If he doesnt produce enough Total IGA the test may be inconclusive. The gluten free diet will tell you if your right or not. I would suggest you have the dr run a vitamin / mineral panel to check for deficiancies.

Also, get a new toaster and condiments that could have gluten in them like peanut butter.
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#22 ciamarie

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Posted 08 November 2012 - 01:06 PM

I would also suggest that you get printed copies of all test results, and reference ranges for the blood tests and post them here. Those who are knowledeable about such things will help decipher them. It's possible he's on the border line, or it shows 'equivocal' or something like that, but it could easily be a positive when taken with the biopsy results. It's also possible that it wasn't a complete 'celiac panel', I forget what the previous messages said in that respect.

It sounds like you're on the right track, don't get too discouraged. :)
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Gluten-free since the end of October 2011

#23 nicoleashley

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Posted 08 November 2012 - 06:53 PM

I am going to have my husband stop by the hospital and pick up the records for me tomorrow. I went down to medical records today and they informed me that I could not pick up records for my husband.... I don't think that is correct but I didn't feel like arguing with the lady today and I had to get back to my unit and take care of my patients, but he is going to get them tomorrow.

And no, I don't believe it was a full panel like I have seen posted here. I think there were only two lab tests ordered.

On a positive note, I ran into my husbands primary this morning and I casually said "hey doc, my husband finally got his GI workup". He asked how it went and I told him about the inflammation on the biopsy and then the negative blood work. He looked me in the eye and said "he needs to stop eating gluten". He seems to think the biopsy and symptoms are evidence enough, although he is the same physician who prescribed the welchol for the diarrhea in the first place, although my husband may not have been as descriptive of his symptoms in the beginning.

I told him we have cleared the gluten from our house, but we just started this week of course, but he is feeling better. He hasn't had any of what I call 'attacks', where he spends hours in the bathroom that interferes witho our daily lives or wakes up in the middle of the night with pain and diarrhea.
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#24 nicoleashley

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Posted 10 November 2012 - 05:36 PM

Alright I have the biopsy and labs. Not sure if I should just post it here or maybe in the pre-diagnosis forum? Anyway, here it is for now:

LABS:
Tissue Transglutaminase IgA Ab RESULT: <1.2 REF RANGE (<4.0 Negative)

Duodenal Biopsy:

- Mild chronic duodenitis with increased intraepithelial lymphocytes.
- No evidence of villous architectural abnormality (see comment)
Comment: The presence of marked increased intraepithelial lymphycytes, despite the lack of villous architectural changes, may be associated with Gluten sensitive enteropathy. Recommend correlatinowith anti-tissue ransglutaminase antibodies.
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#25 GottaSki

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Posted 10 November 2012 - 06:00 PM

Hi Nicole!

A couple thoughts:

The blood work is incomplete. Given the increased intraepithelial lymphycytes your husband should have had a complete celiac blood panel. The tTG-IgA is meaningless without a Total Serum IgA -- IgA deficiency would make any of the IgA based antibody tests inaccurate.

Do you know if there was more than one sample taken for celiac pathology? It looks like it may have been a single sample -- celiac damage can be spotty - especially in the early stages - multiple samples are important.

I'd suggest asking your primary or GI to order the rest of the celiac panel along with nutrient blood tests (if your husband hasn't had them yet) -- vitamin and mineral deficiency is another strong indicator of celiac and often the newly diagnosed will need some supplementation while healing.

Total Serum IgA
tTG-IgG
Deamidated Gliadin Peptide (DGP) - both IgA and IgG
Complete Metabolic Panel (CMP)
Bs, D, K, Iron, Ferritin, Copper and Zinc

I do think it is a very good idea to remain gluten-free for at least three months (six would be better) to monitor symptom improvement - regardless of the negative blood test and early stage biopsy.

Good luck to you both :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#26 nicoleashley

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Posted 10 November 2012 - 06:23 PM

The biopsy was only taken from four places in the duodenum, as the GI doctor didn't see any gross signs of inflammation anywhere except the esophaugus.
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#27 nicoleashley

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Posted 10 November 2012 - 06:24 PM

oh and his CMP is always normal. We get a CBC, CMP, and fasting lipid panel every year. In addition my husband had a sedrate and rheumatoid factor about 6 months ago, sed rate was normal, rheumatoid was negative as usual.

Despite the fact that he weighs 260lbs his cholesterol levels are always perfect, lower than mine. his liver function is normal, electrolytes and kidney function are always fine as well.


EDIT: His GI follow up is on december 4th. If the doctor agrees the the blood panel you listed, will remaining gluten free until that point effect the results?

Also, when you listed the tests, what does Bs stand for?
Bs, D, K, Iron, Ferritin, Copper and Zinc
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#28 GottaSki

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Posted 10 November 2012 - 06:31 PM

All good...would still suggest completing his celiac blood work and nutrient testing. Does his weight match his diet/exercise levels? I ask because some of us have unexplained weight gain rather than weight loss with Celiac Disease. I was deficient in many nutrients despite all other tests being "normal" for decades.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#29 nicoleashley

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Posted 10 November 2012 - 06:56 PM

Just watched that video, wow what an eye opener!
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#30 rosetapper23

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Posted 10 November 2012 - 08:34 PM

Please take a peek at the Australia/New Zealand thread--they mention lots of special treats that are gluten free and can be found in Australia. Personally, I LOVE the Butterfingers shortbread cookies...and there's a shortbread cookie that's orange flavored with chocolate frosting that I adore. My daughter ships these home to me for the holidays.
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