Celiac Wife, Don't Know How Else To Help

[notkuroda]

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

[GottaSki]

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.

[shadowicewolf]

Leaky gut? That might be causing the stomach issues.

[notkuroda]

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.

[1desperateladysaved]

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?

[shadowicewolf]

To my understanding its this:

Open Original Shared Link

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

[bartfull]

If I'm not mistaken, eggs can cause DH flares. And salt of course. Iodine is the culprit.

[Dugudugu]

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...

[GottaSki]

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?

[Rhea48]

May I please ask what is meant by DH?

[mushroom]

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

[pricklypear1971]

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.

[Takala]

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."

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" 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.

[shadowicewolf]

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

[GFinDC]

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.

[notkuroda]

Thanks everybody, that's a lot to think about. I always get some great ideas here and use them to follow up with my own research. A lot to learn for sure.

I am definitely concerned about the thyroid issue. I understand that hypothyroid can be a serious life changer even without Celiac. There's a lot that we don't know about the disorder. She's only seen an endocrinologist once in the last year or so, and that Dr. was of very little help. She does go in to her pcp every 3 months to get blood drawn and her levels checked. They always seem to be fine, but I wouldn't doubt if this problem is connected to that.

As far as cross contamination, we really don't know what else to cut. She has cut dairy, looked into a problem with carageenan yesterday and now that's out so no almond milk. She's eating fruits, vegetables, chicken, rice and fish. We've called every company of every product she's used. Food, cosmetics, cleaning products, hygene products. Switched the dog food to gluten free even though I'm the one who generally feeds the dog. In the past we've been able to figure things out with a food journal and some research. I can't think of anything else we could do right now. It's really difficult because she's probably malnourished because she's not properly replacing what's been cut out of her diet.

She went to see a GI doctor yesterday who, we were told, had a lot of experience dealing with Celiac disease. As she told him her problems, he looked at her like she was speaking a foreign language. Not really much help at all. Two doctors in two weeks, neither any help.

Our next plan is to stick to a 1 ingredient diet for the next few weeks. Nothing with more than one. She's cut out all vitamins and supplements. She takes the thyroid meds and clonazepam for seizures(she also has neurocardiogenic syncopy, or fainting spells). We're looking for a nutritionist who knows this disease and can give REAL information. I know, good luck with that. It seems like priority number 1 is if she's getting glutened or getting gluten-like reactions, we have to make it stop so that she can heal. The way I understand it is the longer it takes the more sensitive she as the intestinal wall grows weaker. My completely uneducated theory is that she went for a month being contaminated by her medication, which really weakened her. Now she's getting contaminated or having similiar symptoms because she's not really better after that month of abuse. We have an appointment with the mayo clinic in March. We're hoping by then we may at least stop or at least slow this continuing cycle. After reading what you wrote I think we probably need to put another endocrinologist at the top of that list too. She's trying to schedule an appointment with a psychiatrist to see if there's ways that he can help with her fatigue and brain fog(which the GI doc recommended)

Thank you all for reading and taking the time to give input. You've become invaluable to us as a resource to help her get healthy. I hope that we can figure this out and I can give back what we've learned and help someone else.

[pricklypear1971]

You really, really need someone knowledgeable about thyroid. Thyroid=brain fog, confusion, depression. If you can find one, a naturapath with a scientific background - like a RN/ND. I personally see one that was an RN, now in an ND and teaches at a major medical school in the nursing department. You need someone who will address the autoimmune cycle that she's in caused by two AI diseases. Endos rarely take the time, or have the patience that is needed to get an AI patient out of a tailspin. And psych doesn't know how to balance the thyroid - they know synthroid can help, but not how to address lingering thyroid issues. Gi docs don't know about thyroid or symptoms.

I know it seems that Celiac=stomach issues=glutening. But not always. Sometimes it IS something else, and thyroid can definitely be a culprit. Sometimes the gi tract just needs to recover, and it takes time. But the other - the mood issues - those are most likely from under treated thyroid/adrenal/hormone issues caused by AI damage.

[notkuroda]

I'm with you pricklypear.

She's seeing the psychiatrist to see if she can get some temporary help. She never had this problem(the fatigue) when she was on adderall. She's looking for something to help her stay up and keep her job while she tries to figure this out. I know that doesn't sound healthy, but she needs her job not just for money but because she loves it and gets a lot of her self worth from that. I wish it was as easy as just finding somebody who knows, but it generally takes a doctors visit and a couple hundred bucks for her to figure out if this person is worth seeing.

Will keep trying

[pricklypear1971]

I'm with you pricklypear.

She's seeing the psychiatrist to see if she can get some temporary help. She never had this problem(the fatigue) when she was on adderall. She's looking for something to help her stay up and keep her job while she tries to figure this out. I know that doesn't sound healthy, but she needs her job not just for money but because she loves it and gets a lot of her self worth from that. I wish it was as easy as just finding somebody who knows, but it generally takes a doctors visit and a couple hundred bucks for her to figure out if this person is worth seeing.

Will keep trying

I do understand. I could write a book about all the doctors I've tried. Most of us are in that same boat.

I guess, my fear for her situation, is that in desperation she'll settle for band-aids, not what will help her correct the problem, long-term.

And many times we get on meds that are really hard to get off of, and they mask the real issue.

I do understand she's just trying to make it through the day. We've all been there.

Just don't give up. I do want to share a link that may help: Open Original Shared Link

[notkuroda]

I have the same fear. Ever since she got diagnosed I've played nurse and pleaded with her to pay attention to her own health and well being. She's a workaholic and always puts more on her plate than she can handle. I'm hoping now she's really starting to get serious. She's not pushing herself too hard and is giving herself ample time to rest when she needs it. We are definitely looking for a band-aid just because she's desperate, but won't stop till we get some kind of handle on this.

Thanks for the link, glad to find someone on here who can also look at it from a thyroid and DH perspective.

[notkuroda]

just wanted to let you all know, I read somewhere around here that carageenan could cause celiac-like symptoms. Did some research and this seems to be a widespread problem. LeeAnne had been drinking almond milk to avoid dairy, sure enough it's got carageenan. She stopped drinking the almond milk and hasn't had a new flare in 5 days. She still feels pretty crappy, but hopefully it's a step in the right direction. She went and saw an NP yesterday, who wrote a prescription that she should work from home over the next 4 weeks. Her boss was very understanding. I'm hoping we're turning a corner here. We made an agreement that even if she has a huge turnaround over the next couple of weeks, she's still going to the mayo clinic, she's still shopping for doctors, she's still seeing a nutritionist. She was prescribed a low grade antidepressant that could give her some temporary relief.

Thank you all, again.

[GottaSki]

Thanks for the update!

It is unfortuanate when removing gluten alone doesn't heal us - beyond frustrating.

Good luck finding all the pieces of her puzzle

[pricklypear1971]

Well, it's great news. And if you notice that rash is less when she avoids carageenan that may be a hint the rash is DH. Carageenan is high in iodine and quite a few DH people find it flares on a high iodine (or even normal) diet.