Need Advice

[Newbee]

I'm frustrated and uncertain of what to do about my remaining symptoms. I was diagnosed with celiac disease almost a year ago and have been completely gluten free. The biopsy came back showing a lot of damage so I understand that can help explain slower recovery. I see very few changes though. I have less D but my stools tend to not be formed which my GI doc said is not good. I've been trying the SCD diet lately which does give me formed stools but I wonder if that is because the main thing I eat are hard cheeses so I think it may just be gluing the loose stools together. With all the meat on that diet I'm afraid it is or will end up giving me other problems. I can't eat raw vegetables as I can't digest them well so mainly eating fish, chicken soup, eggs, and some easy to digest veggies which I put in the soup. Besides the GI problems I have thinning hair that I've heard could very well be related to celiac or vitamin deficiencies. I was hoping my hair might be growing back by now but it is not. Thinning hair is not in the family and in fact I used to have very thick lustrous hair. Now it is only thick in certain places and very thin in others and my hair is dry in general. I've heard this can be related to B vitamin deficiency. I had B12 tested at the same time I got tested for celiac. It came back positive, but I've heard they should test for more than just B12 when they do this test and they did not so wondering if I have problems with B anyway. I've been taking an extra B complex vitamin along with all the other vitamins I take. I've also started having really heavy menstrual cycles. Like I have to buy the largest tampons I can find and then still worry how long they will last (and I'm a small woman and used to not have a very heavy flow at all). I've heard this can be related to complications from celiac too.

Anyway, sorry to go on and on. Just not sure what to do as doctors tend to just stare at me and not do anything when I go in. Any words of wisdom or advice? I'm sick of these problems and I want to get better. I feel like my body is just falling apart.

[mamaw]

I suggest having your thyroid checked via bloodwork... TSH,T-4, T-3, FT-3_FT-4,reverse T-3, calicum, Vit D, & a complete physcial blood work -up....hormones levels also checked

Also you mentioned B-12 being positive? What does that mean? Usually B-12 blood work comes back with a number & the range from the lab....Some lab ranges are between 200 & 800 & docs say they are okay but usually B-12 around 800 + is best....

You may need to rule out other things to getto the root of your problems...

[Newbee]

I had my thyroid checked last year (and have been having it checked regularly as it has tested low but normal before and my mom has low thyroid so figured I may have problems with it eventually). I will ask to have it checked again. I'll ask for all these specific thyroid tests as I'm pretty sure they didn't do all of these tests but just a couple of them. It is time for my annual physical. I'm trying to get into a new doc I've heard is good but when I called to make an appointment the earliest they had was March 2013. So may go back to original doc. She seems quite clueless but will at least run any tests I tell her too (that's how I found the celiac disease - I asked for the test). I forget what the score was on the B12 test but it was in the normal range they had on the test it wasn't showing as low. But still I'm suspicious that I need more B. . . Yep, I'm afraid there are other issues going on. Just not getting any help from the docs I've seen yet.

[mamaw]

Most mainstream docs only check TSH for thyroid...So clearly ask for the other test ! And yes, your B-12 may be in the ranges but again you want to check the numbers & if it is below 800 ask for a monthly injection.until the level comes up & stays there... You can do B-12 caps but they don't always work for some people & they waste their dollars on B-12 caps...

I forgot check your iron levels too.....glucose levels....Be sure to ask for copies of all your testing & start to keep a folder with all the results...

Adrenals also can be a problem... If you want to do the saliva test for that , the best one is from Canary Club but insurance will not pay for this .. The test done via a medical doc is not as good... So I just paid outof pocket to get the one test that actually tells me something....

[Newbee]

Good info. What do the adrenals do and if they are not ok what can they do about it?

[Takala]

You need the antibody test for thyroid, because thyroid levels can skyrocket up and down into normal range with auto immune thyroid diseases. see explanation here: Open Original Shared Link

You should also get an ob-gyn checkup to check for cystic ovaries, which can play he(( with periods. Try the natural form of progesterone cream that you apply to the skin, if your hormones are unbalanced (very typical in peri- menopause, when estrogen starts to dominate your hormones). Also, the SCD diet and a low carb, high vegetable, higher fat (sounds unintuitive, I know) menu sounds counter- intuitive, but it works better for this situation, as you are finding out.

Your chicken broth/soup. Hope this is homemade, I had a LOT of trouble with every commercial form of chicken broth I tried and cannot use any of them, even if they are supposedly gluten - free. Turns out I am sensitive to regular chicken products, probably because of antibiotic residues or additives, and can otherwise tolerate chicken if it is organic. Also, if you are not on organic dairy products, I would try switching over to organic cheeses- this made a huge difference for me.

Supplements- magnesium helps, along with the calcium and D, so be sure your calcium supplement has that.

Double check the status of everything that is going into your mouth. More likely you are consuming one or more little things that don't agree with you, whether it is gluten or something else, and getting rid of it will help.

[mamaw]

Open Original Shared Link

Read on this site about thyroid & how mainstream docs don't get it...

another good grpoup for thyroid & adrenal issues is the thyrpoid support group on Yahoo.com...Sorry I'm on my way out the dfoor & I can'tlook it up at present time... Yahoo has several good groups that can bebfit you in the knowledge area...

[Newbee]

Thanks for everyone's advice!

[cavernio]

Try going dairy free. Many celiacs' antibodies react to some of the caseins in milk.

-Triple check EVERYTHING in your home. Think long and hard about whether there may be residual gluten in your home. All it takes is a minute amount of gluten, so even though you think it all might have 'worn off' by now, a year later, it probably all hasn't. If you are getting daily miniscule doses of gluten you will not get better.

-Are ALL the dishes you use totally gluten free now, or do you have a few old ones kicking around because you thought they were safe?

-Does anyone in your house eat gluten? If so, do they use separate towels for their hands?

-Do they wash their hands regularly? If they don't, common things you both touch, like faucets and doorknobs, may have gluten.

-Do you wash your hand before you eat everything and anything?

-Do you bite your nails?

-Are your shampoos, conditioners, moisturizers, hairsprays, makeup, dish soap, dishwasher soap, laundry detergent, other cleaners you use, ALL gluten free brands?

-Take probiotics

-As already mentioned, some foods you think are gluten free may not be. Double check every packaged item you eat for gluten with the manufacturer. Unless they guarantee it, don't use it anymore.

[ravenwoodglass]

You have gotten some great advice. If your doctor will not do the injectable B12 then go for the sublingual B12. You place it under your tongue and it is absorbed through the mucous membranes avoiding the damaged gut.

Biotin is also helpful for hair and nails so you might want to add that to your supplements. Do as was mentioned make sure your shampoos and conditioners are gluten free. I have to go soy free also as soy in any form will cause my hair to fall out. May not be the case for you but you may want to try avoiding soy in injestables and topicals for a bit and see if it helps.

[Newbee]

I'm mostly dairy free except for the cheese which I eat a ton of because it is like the only thing on this SCD diet I can eat now that I really like and find filling. I wonder though if it isn't causing issues with my hormones. Sigh, it would be so much easier if I didn't have to eat at all. I appreciate the post on looking for gluten in the house. I was very thorough when I started the diet making sure everything was gluten free, etc. I'm the only one that lives in my house and I won't let other people bring gluten containing food into my house. So I'm doubting it is a cross contamination issue. All I eat now is cheese, homemade chicken soup with fresh veggies, and eggs and fish. So nothing processed where gluten could be hiding. I've been thinking about taking the extra B12 but have been holding off until I go back to the doctor asking for the specific tests so they do it correctly this time. I wouldn't be surprised if that is part of the issue (low B12).

I was talking to my Mom on the phone last night and she was suggesting I go see a doctor at the celiac center in Chicago. That's a 2 to 3 hour drive for me. I'm skeptical that will help and will make me have to take an entire day off work, plus not sure if insurance would cover this or not. Anyone have any great luck going there that you think it might be helpful?

[DogWalkerNYC]

Hi Newbee, I'm new too and equally confused but I do believe the answers will come in time. My main symptoms (bloating after eating wheat products, post-nasal drip, congestion, even severely arthritic knees) have all responded positively to being gluten free. I am now dealing with hives that came after eating strawberries yesterday, but didn't come after eating them today. I wonder if there's a period of detox the body goes through as it heals, and if so how long it lasts. If there's severe damage maybe detox takes longer. Maybe my hives are a form of my body getting rid of toxins. Maybe someday it will all make sense! Until then, I am grateful for this beautiful day, gluten free food and this forum.

[flowerqueen]

I'm frustrated and uncertain of what to do about my remaining symptoms. I was diagnosed with celiac disease almost a year ago and have been completely gluten free. The biopsy came back showing a lot of damage so I understand that can help explain slower recovery. I see very few changes though. I have less D but my stools tend to not be formed which my GI doc said is not good. I've been trying the SCD diet lately which does give me formed stools but I wonder if that is because the main thing I eat are hard cheeses so I think it may just be gluing the loose stools together. With all the meat on that diet I'm afraid it is or will end up giving me other problems. I can't eat raw vegetables as I can't digest them well so mainly eating fish, chicken soup, eggs, and some easy to digest veggies which I put in the soup. Besides the GI problems I have thinning hair that I've heard could very well be related to celiac or vitamin deficiencies. I was hoping my hair might be growing back by now but it is not. Thinning hair is not in the family and in fact I used to have very thick lustrous hair. Now it is only thick in certain places and very thin in others and my hair is dry in general. I've heard this can be related to B vitamin deficiency. I had B12 tested at the same time I got tested for celiac. It came back positive, but I've heard they should test for more than just B12 when they do this test and they did not so wondering if I have problems with B anyway. I've been taking an extra B complex vitamin along with all the other vitamins I take. I've also started having really heavy menstrual cycles. Like I have to buy the largest tampons I can find and then still worry how long they will last (and I'm a small woman and used to not have a very heavy flow at all). I've heard this can be related to complications from celiac too.

Anyway, sorry to go on and on. Just not sure what to do as doctors tend to just stare at me and not do anything when I go in. Any words of wisdom or advice? I'm sick of these problems and I want to get better. I feel like my body is just falling apart.

Hi! I'm new on here too, but quite a few years ago I was diagnosed with an under-active thyroid (diagnosed Celiac 6 months ago) and it started ringing bells when I read your post. I lost 50 percent of my hair (fortunately I had very thick hair to begin with) I also had very heavy periods. I think it's definitely a good idea to get your thyroid checked out as when you have one auto-immune disease already, the chances of having another are increased. The good news is, that if it turns out to be your thyroid, it's treatable! Good luck!

[cavernio]

So you may think this a little extreme of a suggestion, but you could try fasting for an extended period of time, like a week+.

If you're still ingesting something like eggs or dairy that's causing your antibodies to still react, it's probably not going to solve that issue when you start eating them again after the fast. However, fasting puts your immune system into low gear. (Of that I'm pretty confident, doctors who support fasting and one's who also don't support it report that your immune system will become less active.) This can be a very bad thing, but in the cases of auto-immune diseases, it can obviously be a good thing. I mean, chemo is an acceptable treatment for people with severe arthritis because it destroys your immune system. Fasting is less extreme than that IMO, and might be as effective as that. Especially if you really wish you just didn't have to eat, just don't for awhile.

My only worry would be that you (which is also a worry I have for myself when I consider fasting), is that already being low in nutrients from having damaged intestines, it will only make those particular deficiencies worse while you're fasting. I'd pump up the vitamin intake for a couple weeks first and then try the fast. It's something I would do in your shoes (and I still may end up in your shoes...) Err, I guess if you're a skinny person, (skinny as in low body fat), fasting could be dangerous too. You need to be over a certain percent of body fat or else you will start to starve. Most people in North America are well over that low threshold.

Another thing, since you're certain your home is gluten free and your food is gluten free, (and i know this is still basically the same thing) but have you considered your workplace or somewhere else you visit weekly/monthly? Does your romantic partner use only gluten free products on their skin and hair? Just trying to get you to think about absolutely EVERYWHERE you could ingest gluten from. Unfortunately, it could be something you only ingest like, once a week or even once a month. Or maybe even just something you had before your most recent biopsy. (Well, that won't help how bad you still feel, but it could give you the assurance that you're feeling bad from, say, thyroid problems and that you just messed up once for the intestinal damage.)

Seeing a specialist isn't a bad idea either of course, just suggesting alternatives.

[cavernio]

Oh, one more thing about B12, what's considered 'low' in North America is lower than what's considered low in much of Europe and Asia. I had B12 levels at like 220units or something which my doctors said was fine, only to find reading the wikipedia article then (it's been changed since) than in Japan anything under 400units would result in injections.

[ravenwoodglass]

So you may think this a little extreme of a suggestion, but you could try fasting for an extended period of time, like a week+.

IMHO a week is too long to fast. The body needs protein to repair tissues and also fasting that long will put your body in starvation mode and you will start losing muscle.

I fast frequently myself and would never fast more than a day or two at most. Someone who is still ill should consult with their doctor before beginning a fast.

[Newbee]

Flowerqueen, thanks for the input on the thyroid. I had it tested a year ago and they said it was normal, but they only did the one test. My mom has an underactive thyroid and I've tested low but normal before so maybe some more tests would reveal that that is the problem. Cavernio - I think I'm too skinny to do a fast. I keep losing more and more weight and unlike the typical American I don't have any to lose. Thanks for the info on the B12

[IrishHeart]

ANYONE suffering from malabsorption or recovering from celiac should NEVER, ever FAST!!

Sorry, but anyone who suggests this is not considering the long term ramifications we have suffered. I do not think it wise at all.

A fasting period will not suddenly resolve your symptoms or make your hair grow back in.

I know, I am still trying to grow mine back in after 18 months gluten-free and being seriously ill for many years.

Causes of hair loss:

A malfunctioning thyroid

a low vitamin D level

a folate deficiency anemia

menopause

Heredity

pregnancy

iron or B-12 deficiency anemia.

Others include various autoimmune diseases

polycystic ovary syndrome (PCOS)

skin conditions such as psoriasis and seborrheic dermatitis.

Other reasons for hair loss include

extreme stress;

physical trauma like surgery or intense illness;

dramatic weight loss over a short period of time;

taking too much Vitamin A.

If you are still losing weight, I suggest seeing a doctor ASAP.

Do you have a good celiac-savvy GI doctor watching over you?

If not, call the local celiac support group and ask who their advisory board doc is. Go and see him/her and get the follow up care you deserve, so you can stop speculating what is causing the problems.

Hope you feel better soon.