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Celiac Wife, Don't Know How Else To Help


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22 replies to this topic

#1 notkuroda

 
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Posted 06 February 2013 - 09:33 AM

Hi all. I've been posting in the regular forum but thought I should start posting here since I don't suffer from this disease the way most people on the forum do. But man, this is starting to get hard.

My wife was diagnosed Celiac a little over 3 years ago. We've constantly read and researched as much as we can about the disease. In November of last year she started getting DH inflammations. Generally, when she gets contaminated, she has a few days of digestive problems followed by DH. Generally, her DH clears up about 7-10 days after the initial contamination. I know this sounds minor to the horror stories I've been reading on here but it is what it is. So back to my story. There are times that the DH contamination is not accompanied by any digestive issues, but it is a red flag that she got something in her system. Anyway, come to find out that Synthroid, the thyroid drug she's been taking all of her life, is no longer gluten free. So she switches meds, DH clears up, she feels better in a week. She goes on vacation, and when she gets back, she gets another flareup.

The flareups have been coming on and off ever since late December. It starts to get cleared up, then she gets it again. We've taken out dairy, soy, any processed foods. She's basically eating fruit, veggies, rice, and eggs, taking vitamins and her medication and yet as of this morning she has had 3 straight days of digestive problems followed by increased DH. There's no gluten in the house. I've even given up beer(mmmmmmm beeeeeeer) which was the last gluten holdout we had in the house. But I don't want to take any chances. We've washed bedsheets, done a deep cleaning, called companies, can't think of anything else we can do. I don't kiss her unless I've thoroughly sterilized my mouth.

This constant contamination(if that's really what it is) leaves her sick with no energy. She struggles to keep her eyes open. When she can do it, she can't concentrate. She's missed a few weeks of work through this time period. She had been prescribed adderall to help her function, she doesn't take that anymore either due to contamination fears. She's horribly depressed and has told me she's had suicidal thoughts. She emailed this to the mayo clinic a few days ago and they called her to check and make sure she was ok.

I know many of you get contaminated and the effects last weeks or even months. She's lucky in that that doesn't happen to her, but she keeps going through these cycles of getting better/ getting worse.

Its getting harder just for me to keep it together, much less her. I started taking antidepressants about 2 months ago, and it's helped me a lot. But everytime she gets a new contamination, I feel so defeated. I'm like her nurse at this point, I'm the one who constantly remind her that her health is the most important thing, no matter the cost. But I really can't even think of any possible way she could be getting contaminated. So I'm as depressed as I've been since starting the medication. I started taking it because I'd break down in tears at work and have to leave early. That's where I am today.

It just feels like after doing the diet for years and learning more and more about the disease, she's in the same place that she was before she got diagnosed. At that point, she was literally a few feet from suicide.

I'm scared and very alone right now. Friends really don't understand what this is like. My parents keep getting on my case because they think there must be a doctor or medication somewhere who can solve these problems. They don't get that it doesn't work that way

I'm open to any thoughts or suggestions you may have
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#2 GottaSki

 
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Posted 06 February 2013 - 09:48 AM

Has she tried a strict elimination diet to determine if there are other foods causing problems. For me -- I tried removing one food or group at a time for over two years with no real results. Then I removed all grains, legumes, nightshades, dairy, nuts and seeds for a month. Major improvement for the first time on the roller coaster that had been my health (or lack there of).

For the next several months I trialed each food (not group) -- one at a time and found I was intolerant of almost all of them. I still had another flare last spring but am now doing better than ever before in my life (knocking head against wood).

This type of elimination diet is tough, but was helpful for me.

That being said...the MOST important thing to do is what you are doing -- looking for answers - they can be very tough to find as we are all different, but keep trying.
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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 :)


#3 shadowicewolf

 
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Posted 06 February 2013 - 09:48 AM

Leaky gut? That might be causing the stomach issues.
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#4 notkuroda

 
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Posted 06 February 2013 - 10:01 AM

Lisa, she tried the elimination diet in the past. Did determine that she had problems with things like nightshades, but eliminated them from her diet. Problem is right now, there's not much else to eliminate, she's eating so little

Shadow, what is leaky gut? I've heard that phrase tossed around a bit and don't really think I've ever understood it

She has an appointment with a new GI doc on monday who says he treats lots of celiacs. Also has an appointment at the mayo clinic in March. I wonder in the meantime if I shouldn't be taking her to a hospital to get her some fluids or vitamins.
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#5 1desperateladysaved

 
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Posted 06 February 2013 - 10:03 AM

I am sorry to hear you are still having such troubles. I can relate to many relapses. How long gluten free now? Some (Like me) tolerate no grain. She has to eat something, though. Meat is my one of my good foods.

Here is my steps to clear mind (all of them I can think of)
Natural organic foods
no sweets
supplements as determined by testing (I havent' listed all of these, because it is way to complicated with each supplying many nutrients.)

gardening
soapmaking (My eczema left with this and supplements)
gluten free
grain free
intolerance testing (intolerant to all 60 but 11)
rotational diet. (Since this step I have a clear mind and no fatigue without excertion!
Pancreatic enzymes
IgG supplement (This helps heal the gut)
Vitamin B12

Please don't give up without trying all these. Then keep finding more to try. We want her to have strength and energy.

Have you tested everything that has been elimanated? How about tried paleo or some other. She needs all of the nutrients she can get.

Reading all this in and surrounding this post; Maybe she is malnourished?
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#6 shadowicewolf

 
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Posted 06 February 2013 - 11:51 AM

To my understanding its this:

http://en.wikipedia.org/wiki/Leaky_gut

I could be wrong, however, it matches what i've heard.
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#7 bartfull

 
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Posted 06 February 2013 - 02:44 PM

If I'm not mistaken, eggs can cause DH flares. And salt of course. Iodine is the culprit.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 Dugudugu

 
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Posted 06 February 2013 - 07:51 PM

I'm very sorry to hear this. You didn't mentioned pets. Do you have pets? If so, are they eating gluten free? Just a thought...

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#9 GottaSki

 
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Posted 06 February 2013 - 08:34 PM

What "little" is she eating? Given the three year lack of recovery I repeat - keep looking for what foods could be impeding recovery.

How long does she believe she went undiagnosed?

Does she abdominally bloat for no apparent reason?

Are there days she can do everything followed by serious flare?
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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 :)


#10 Rhea48

 
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Posted 06 February 2013 - 10:16 PM

May I please ask what is meant by DH?
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#11 mushroom

 
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Posted 07 February 2013 - 12:56 AM

DH in this context refers to Dermatitis Herpetiformis, which is the skin form of celiac, a very painful, intensely itchy rash which blisters and oozes. Elsewhere on the forum you might find people referring to Dh meaning dear husband :)
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Neroli


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#12 pricklypear1971

 
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Posted 08 February 2013 - 04:29 AM

DH can flare off and on for years without a trigger. It may be diet related, it may not.

The huge red flag I see here is that she just switched thyroid meds and she's experiencing classic hypo symptoms...meaning she feels worse. It can take time to adjust to new thyroid meds and to find the right dosage. It's also possible that her thyroid issues have been under treated for many years (which could explain a lot, retrospectively).

I'd bet money her problems - digestive and DH are related to autoimmune thyroid flares. You need to look into her thyroid.

I have DH. When I was "all tore up" with it, the DH did wane/wax with my cycle. I was also very sensitive to iodine. She may need a strict low iodine diet for a while to help control the DH. Google thyca.org.

It could be that she has Hashimoto's Thyroid??? I assume so...you have hypo/hyper stages with it. That could explain her ups/downs. Just because she's celiac doesn't mean it's always gluten. My thyroid and tapped out adrenals (steroids from DH treatment) are the primary "sick" feelings I experience. Could be the same with her.

She needs to see about her thyroid meds. She needs thorough testing - not just tsh levels. She also needs a doc who listens to how she feels and will treat her thyroid/hormonal/adrenal issues to help her get her life back. And yes, I'd bet money she has adrenal/hormone issues. If you have autoimmune disease (and it sounds like she has two), you most likely have issues.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 Takala

 
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Posted 08 February 2013 - 10:25 PM

What has changed since November ?

It continues to infuriate me, the irresponsibility of these Pharmaceutical companies which continue to put GLUTEN into thyroid medications which are frequently used by celiacs. And nobody yet is willing to do a thing about it in "regulation land." :angry:

There are two things going on here. One, the dosage of the thyroid medication may now be "off" because the body is in auto- immune flare. Search the FDA database and other online forums and sources for reviews of the specific drug, and make sure there have not been recalls or other problems with it. Different formulas may have different potencies. Can't keep the eyes open... She's way low. Too low and it becomes a medical emergency. From what I have read and heard about, one REALLY has to get on these doctors very, very emphatically that this is NOT working, because they tend to under dose "by the book," and not how the person feels and reacts.

Two, there is obviously cross contamination coming from somewhere from something that is going into her mouth. My first suspicion is it is still some sort of medication or supplement. But... By any chance, is she the rare gluten free oat reactor ? I developed this last year, and had to ditch things made or run on lines in a facility with oats. Another surprise I got to experience was I started getting a bit wonky after eating rice or rice pasta my spouse made. I really shouldn't be reacting to plain rice.... what is rice cooked in... salted water. Well, he had purchased a new box of iodized sea salt, same brand..... study the label, and here it has DEXTROSE in it as a carrier for the iodine solution. Dextrose can be derived from many different grain products. Technically, this box is likely gluten free, but as a sensitive person prone to skin problems, if my base ingredients do not say on the box exactly what they are made of, they are marked with a big "X" before they get throw out. I may keep the box itself for reference. When I saw the salt companies signing up against the CA GMO labeling proposition this fall, I knew that it was likely corn that was the source, because most commercial corn is GMO at this point, and they didn't want their boxes of "natural sea salt" to say "Contains GMOs" :angry: I don't have a corn problem but corn can have a cross contamination problem, if the manufacturer is not careful, and every box of iodized salt I've seen since then has this crap in it. So now we are using plain salt here.

For future reference, if she tries to reintroduce dairy, I also had to go to organic dairy products for the most part. I have had some real distinct itching reactions to non-organic dairy products, enough that I wonder just what is it that they load those poor cows with, to keep on pumping out the milk. :(
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#14 shadowicewolf

 
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Posted 08 February 2013 - 11:48 PM

^I believe they use a type of iodine product to clean the cow's utters with before attaching them to the milk pump
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#15 GFinDC

 
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Posted 09 February 2013 - 09:20 AM

There was a story on here recently about Abbot lab thyroid hormones being mis-labeled. They were labeled 150 mcg but were only half that potency. I don't know how long that was going on or if it is totally resolved now. I think it was levothyroxine that was mislabeled.
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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




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