22 replies to this topic

[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: http://thyroid.about...oid-Doctors.htm

[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.