Lots Of Questions

[beth01]

Hi all, my name is Beth and am a newly diagnosed celiac, April 6th 2014.  My daughter is 11 and is newly diagnosed also.  I have a ton of questions, so I am going to lump them all into one post if that's ok.......

1. I know this is a totally dumb question, but when will I start to feel better?  My nausea has gotten better ( got my appendix out two weeks ago, it was inflamed for two months so I was walking around with chronic appendicitis), but I am so tired all the time.  I am deficient in B12, vitamin D, magnesium,  potassium, and iron and calcium.  I have been taking supplements but I don't even have the energy to walk a block. I am not sure if there is more that I should be doing.

2.  Will the other food intolerances that I have get better once my intestines heal or am I stuck with them?  Right now I am just eating, beef, apples, asparagus, bananas, and chex cereal.  Everything else is either hit or miss, some days they don't bother me, other days they make me feel like poo.  What is the best way of figuring out what really bothers me?  Should I be getting other foods tested for allergies?

3. How do I get excited about food again?  I spend so much of my time trying to figure out what I should eat that I end up not eating.  I am really only hungry at 2 am.  Sounds funny, but every 2 a.m. I am starving.

4. When do I worry that too much weight lost is too much?  I am 6 foot tall and weigh 158 pounds, I have lost 160 pounds in the last few years.  It sucks that I had that much weight to lose, but about 12 years ago I put on an unexplained amount of weight after being fairly thin my whole life. Now if only all the extra skin would go with it.

5.  Last and not least, how do you deal with all the emotional baggage?  Friends don't understand just how sick you can be after being undiagnosed for so long, I haven't worked in three months and really have no hope of getting a job any time soon until I feel better, I don't have any sort of short term disability so I am not getting any income at all.  It is all starting to wear on me.  Not sure if I need an anti-depressant or not, or if I just need answers.

6. Thought of another, does anyone live around Lacrosse WI?

 

Thank you for your help in advance..

[w8in4dave]

Wow well the 1st thing is go to the Newbie 101 thread , there is alot of great info in there!

2. There is never a dumb question, but your answer is, there is no clear answer. Some heal quickly , some have more damage and take a long time to heal. I mean if you think about it. Some have suffered for years and years , others have suffered for just a couple years or months. so it really depends on the healing time and how they eat after also. I hear it can take a couple years to heal. 

3. How to get ecxited about food again? Well thats not as hard as you think. I eat alot of natural foods. Fresh fruits and veggies and whole fresh meats. I wouldn't jump on the gluten-free band wagon of a bunch of processed stuff. But it is a choice. 

4. When to worry about too much weight loss? I think once you figure everything out, your weight will stablize. You may gain some back with the new way of cooking You can cook a snack and eat it at 3 am  

5. Emotional baggage, I feel for you there, Celiac is a learning experiance, I have had great support. I just tell those that don't know it is a genetic disorder and I just can no longer ever eat this stuff unless I want to live in the bathroom. 

I did read in there about your other intolerances , Yes you may or may not get them back. I can eat some cheese but no butter, Corn is no no for me! That knocks gluten-free stuff just about out for me. No soy for me either. But I am hoping with healing and time when my Villi heal alot I will get at least corn back. 

I wish you all the luck. There is a thread for cooking and recipes so look into that also. Good luck and take care. 

[nvsmom]

Most people have some improvements within the first few weeks (like stomach aches) but many symptoms take months to sort themselves out. Most people are quite noticeably better after 6 months gluten-free but some symptoms, often ones to do with the brain and nerves or some pains, can take a year or two to improve. It varies wildly between people.

 

Because you have such fatigue, you might want to consider being tested for hypothyroidism.  Hashimoto's is linked to celiac disease, and slows your metabolism so you feel tired and achy. It can also slow disgestion, cause hair loss and multiple other problems. If you do get tested for Hashimoto's thyroidiitis, these tests are good to request:

TSH - should be near a 1 regardless of the lab range given

TPO Ab -  should be very low, but you can still have low thyroid function without a positive test... I do

Free T4 and free T3 - both should ideally be in the 50-75% range of your lab's normal reference range - be sure you do not get the T4 and T3 or total T4 and total T3 as those tests do not tell you much.

 

As for intolerances, lactose intolerance is one problem that quite often improves after being gluten-free for about 6 months. Other intolerances may improve but I have not seen any real trend in that.

 

Allergies are very different than food sensitivities, so you'll need separate testing for those.  Most doctors do not recognize the validity of sensitivity testing, but I know people who have been helped by it.  You will need to be eating those foods prior to being tested though.

 

You'll get the food thing figured out in the next few months.  The first months gluten-free are very difficult as you teach yourself a new way of eating and break habits of a lifetime.  It takes a few month but you'll find new foods to love and get used to eating differently. By the end of the summer, it will be getting easy for you.  

 

Are you wanting to lose any more weight?  If not, you'll need to up your food intake a bit.  Carbs often work the best for putting on weight - not the ones found in whole foods but those in processed foods.  

 

If you are at a good weight, you might want to just wait it out a bit as weight does tend to stabilize after a few months on the diet.

 

As for the baggage, once you get used to it, it won't matter much what others have to say about your diet. I find once someone starts feeling well, we guard that dearly. It doesn't really matter what others think in the long run, you just need to give yourself time to get used to it all.... It's tough but you'll get it.  Just hang in there.

[1desperateladysaved]

 Go to the seed store, if you garden, or to the grocery store and pick foods you have never tried.  These you should not be allergic too.  In the produce aisle, I found fennel bulb, which has a light licorice flavor.  It looks a little like an onion with green feathery plume on top.  One new one I picked up is Jicama.  It looks like a white ball covered with light brown skin.  In the meet department I found I had to bypass chicken and beef and get lamb, yak, elk, and bison.  Instead of flour, you can use nut flour.  Check out some SCD recipes for how to do that.  I think adding variety to your diet will optimize your recovery.

 

I can't tell you how long it will take to get better.  BUT if you walk everyday toward your goal, you will get somewhere.  I did have constant fatigue that was tied to food intolerances and ferritin levels.  The right supplements are helpful.

 

Dee

[NatureChick]

First, I'll share some hope that symptoms can resolve within days or weeks. Years would be the less-common scenario and often is indicative of some other unknown factor. Also, it really does take just a few months before you can be one of those people who rarely gets glutened. When I first started, I thought that it was going to be impossible. Now, staying gluten-free is as easy as not paying attention was before. 

I'll just stick to the deficiencies. 

Of course, it is best to get vitamins and nutrients from your food. But if you've gotten to the point where you're testing as deficient, it can be really difficult to get some of them back on track through diet alone. I would only supplement those that you are actually deficient in, make sure that your supplements are gluten free. And research all of them on your own before you go shopping. Just google the vitamin with the word "side effects" and you should be able to find dosage and reactions. 

A multivitamin is not going to help solve deficiencies and will likely cause you to become too high in something you don't need.

Taking supplements in the morning often helps avoid the sleep disruptions some can cause, and many will be absorbed better with food, some with specific types of foods.

And definitely follow up with testing in a few months, and a few months after that to keep tabs on how effective the supplements have been.

Timing: If you were taking the right dosage on a regular basis, I'd expect that the worst of the symptoms caused by deficiencies would have improved within the first month and be completely unnoticeable within two to three months. To actually get levels back to ideal levels, especially for women who still get their periods, I'd expect it to take a couple of years -- presuming that you would also back off on dosage levels in order to avoid side effects. 

B12: If you have abdominal pain, I'd guess that the B12 deficiency would be the cause more so than being a direct result of celiac. Sublingual supplement tablets work really well. If your deficiency was bad enough to cause abdominal pain I'd expect it would take at least a month of daily supplements to stop having pain altogether, maybe two, but things would improve noticeably in just a few days. You'd likely go in and out of having pain for the first few weeks. Of course, results would vary depending on the dose. 

B12 supplement side effects are pretty easy to notice. They include acne break outs (deep, painful sores that can take weeks to heal on your face or torso) and folliculitis that can be painful and itchy. If you get either of these, I'd cut back on your dosage. If your supplement is a hard tablet, you could simply cut a full tablet into halves or quarters in order to reduce the dosage. All B12 supplements are synthetic so making sure you are including foods high in B12 in your diet might mean that you can rely on supplements less.

Vit. D: Almost impossible to raise levels with supplements alone. You need sun exposure. Most of the effects of a vitamin D deficiency aren't going to be physical symptoms that you can see or feel. Vitamin D is actually a hormone so a deficiency is likely to affect your mood most noticeably. All the more reason to go get some sun now, and tomorrow, and the next day ...

Vit. D supplement side effect can be quite dangerous but difficult to notice. If your supplement dosage is too high or used for too long, it could raise your blood calcium levels which puts a lot of strain on your kidneys and circulatory system. If you have any sort of pain in the area of your kidneys or start experiencing symptoms that are more common with vasculitis - back off on the D supplements, take a break, or try a lower dosage.

Of course, sun exposure doesn't have any of these problems but some of its own. UVB rays are the good rays that are needed to produce vitamin D naturally but are easily dispersed by our atmosphere. UVA rays, that cause the most damage to our skin are less refracted by our atmosphere and can penetrate clouds. Both cause burns and tans, but if you want to get the most good rays, try to get sun exposure as close to high noon when the UVB rays have the easiest time penetrating the atmosphere. That said, if you have a deficiency, I'd worry less about the time of day and just get some sun.

Iron: Should only be taken by people who actually test as deficient because too much raises heart attack risk, among other problems. If your iron dose is too high, you'd become constipated though most of the other blood-related side effects of iron supplements wouldn't be noticeable unless you crossed over into having levels that were too high rather than too low. (If you have damage to your intestines such as ulcers or colitis, iron could actually make the conditions worse.) 

This is one of those that smaller doses over a longer period of time may be the smarter route to go and making sure you're eating foods high in iron. Again, if your supplement is a hard tablet, you may be able to halve or quarter it yourself. 

I mention cutting supplements at home because sometimes, lower dosages simply aren't available, especially when you're already limited by having to find gluten-free options. Also, if you do have reactions to a dose that is too high for you, you might still make use of the supplement without having to buy new, or you could save money by buying a higher dosage and splitting it yourself rather than buying more bottles of a lower dosage. But it only works with hard tablets, not capsules or soft gels. 

I don't have personal experience with the following so I'm less familiar but here is what I know:

Magnesium: Super easy and inexpensive to supplement simply by taking a bath with epsom salts (though difficult to monitor dosage this way). If you overdo it, you'll get diarrhea. High doses do cause kidney damage so not something to make a part of your normal routine if you don't have a deficiency.

Calcium: Definitely research this one before buying supplements because how well it is absorbed varies greatly from one type of calcium to another. Also is absorbed better in combination with other nutrients.

Potassium: This one should be easier to raise levels through diet alone because it is in so many common foods. Potassium supplements aren't recommended for people who have digestive disorders, so I'd also be wary knowing that a recent celiac diagnosis would put you into that group. Too much salt in the diet also affects how potassium is absorbed so reducing sodium could help as well.

[beth01]

Thank you guys for your responses.  I know I asked a lot of questions where the answers vary from person to person.

 

NVSMOM - I was diagnosed with Grave's disease almost twelve years ago.  My thyroid levels have been good, a little on the high end of normal but still within normal range.  I have been on a dose of 300 one day 450 the next.  I really don't want to be on a much higher dose since it messes with your bones and I already have osteoarthritis in my spine. About the weight loss, I don't want to lose any more weight it just keeps coming off.  I had an appointment with my surgeon on Friday and have lost 6 more pounds in the last 2 weeks.  I really don't have any more weight to lose.  All that is coming off now is muscle mass.  I told her I was concerned and all she said was my GI would have to address the issue.  Thankfully I see her on Monday.

 

Naturechick - Thank you so much for the information on the vitamins.  I was talking a multivitamin daily and all the rest of them on top of it. I was also taking them at night (no wonder I have a bit of insomnia) because I tend to have nausea in the mornings.  Almost all of my levels were less than the lower limit of the test range. My GI had told me after my scope that I have very significant damage in my intestines and believes that I have been undiagnosed since birth ( I turned 37 this year). With all that damage will it take longer for me to be able to start absorbing nutrients? I feel a ton better after having my stool impacted appendix out.  I am also waiting on colonoscopy results, I had one the same day I had my appendix out ( along with a hernia repair and a lower exploratory laparotomy).

 

And for all of you - thanks for the advise on food.  I know in my head that eventually it will get better and easier, I just needed to hear it from people who have experienced exactly what I have been going through. I for one haven't had the energy to do much cooking from scratch, something I used to rather enjoy and that has added to my depression.  I did the other day though make a pot of homemade chicken dumpling soup that turned out wonderful ( made me not feel so well, but I ate it anyway), and I plan on baking a " Better than Sex" cake tomorrow.  I also made a taco casserole last night that was awesome that turned into a disaster.  When I shopped shortly after my diagnosis I had bought the wrong brand of taco seasoning ( darn brain fog ) and thinking it was gluten free, I ate it.  Really regretting that today, it didn't cause a full on glutening but I am pretty nauseous today.

 

There really has been a few good things that have come out of this whole fiasco. I haven't had a migraine in two months ( I was having 4+ a week), and I no longer think I am going insane.  I had brain fog something fierce and was starting to think I was getting early on-set alzhiemers. I was calling people by the wrong names all the time ( the worst was my boyfriend of three years, six months ago I started calling him by my ex-husband's name), I couldn't think of words I wanted to use, couldn't do puzzles any more. I had a lot of problems at work because I couldn't remember what I was doing. I seriously thought I was insane.  I am just a little foggy now but It has gotten worlds better. I know things will get even better as time goes on, it's just so damn frustrating. I get so angry and don't know why.  I thought about asking the doctor for an anti-depressant, but I really don't want to add another pill to the mix already being swallowed every day.  If the depression gets worse I might have to.

 

Once again, thank you for the kind words. They mean a lot.

[nvsmom]

 

NVSMOM - I was diagnosed with Grave's disease almost twelve years ago.  My thyroid levels have been good, a little on the high end of normal but still within normal range.  I have been on a dose of 300 one day 450 the next.  I really don't want to be on a much higher dose since it messes with your bones and I already have osteoarthritis in my spine. About the weight loss, I don't want to lose any more weight it just keeps coming off.  I had an appointment with my surgeon on Friday and have lost 6 more pounds in the last 2 weeks.  I really don't have any more weight to lose.  All that is coming off now is muscle mass.  I told her I was concerned and all she said was my GI would have to address the issue.  Thankfully I see her on Monday.

 

Grave? Nasty! That's a tough one. That one probably won't help with keeping weight on either.

 

300 mg of levothyroxine? Is that what you are taking? If so, I'm surprised you are taking so much with a history of being hyper. I probably have the dosages mixed up or something.

 

Good luck with the GI on Monday!  

[beth01]

They are micrograms.  I have been on this high of a dose since I was pregnant with my son, he just turned 9.  My endo wants my TSH to be between two and three, but it seems I can never get there. My FT4 is always normal so we don't up the dosage.  Maybe that will change once I start absorbing more, maybe I am having a problem absorbing the meds also? I had the radioactive iodine so we had a really hard time getting my TSH regulated after that. It was >100 for months, I was miserable.  But when I was diagnosed my TSH was undetectable and my FT4 and T3 were too high to even titer out to get a result ( I know, I did the testing at work one night trying to figure out what was wrong with me lol). The doc that diagnosed me said I was hours away from a thyroid storm.  I used to be a Med Lab Tech but was so sick I couldn't function anymore.

I lost a bunch of weight before my diagnosis, I had gained a lot of weight ( unexplained and about 50 lbs) about a year before I got pregnant with my daughter.  The week before I left the hospital I had lost 30 of that.  BOOM, gone.  Then after the iodine, I gained >100 pounds.  In the last three years I have lost 166 pounds, more than I now weigh. Nothing I do keeps any weight on.  I eat as much as I can, just blah.

[GFinDC]

Hi Beth,

 

I hope you feel better soon!

 

I'd ditch the Chex cereal for now.   I've had symptoms form eating Chex cereals in the past and don't eat them anymore.  Do you like sweet taters?  They are pretty good and easy  if you microwave them for 10 minutes.  Then split them open and dig out their innards with a spoon.  Add some peanut butter and whatnot, stir and they make a nice food.

 

Do check all your vitamins and meds for gluten.  I usually stick with Nature Made or Solgar vitamins.  I have never had problems with them.  Gut damage does take time to heal.  A month won't do it.  It can take months of eating a clean diet for healing to happen.  A clean diet doesn't include any processed foods.  Instead stick with foods in their natural state, whole foods.  Things like taters, meats, nuts, fruits etc that are not processed.  That taco seasoning was a bad idea.  Instead get the spices as separate containers and mix them in the food yourself.  McCormick brand spices good as they include any gluten ingredients on the label.  It's best to use single ingredient spices not mixes.

 

Try to stick with foods that have 3 ingredients or less.  You may spend more time cooking but you will know you are eating safe foods.  Some people make large batches of food on the weekends and freeze portions for eating later.

 

As your gut does heal your thyroid dose will probably have to be adjusted down.

 

When we get gluten, it causes antibodies to be targeted on the gut cells.  Those antibodies aren't like a light switch.  Once they start being made, they can continue for weeks.  So the damage doesn't stop the day after you quit eating gluten.  That's why it's important to avoid any chance of gluten in the diet, because the immune attack won't stop otherwise.  A simple, whole foods diet is much easier to maintain gluten-free than a diet with processed foods in it.  There are far fewer ingredients to keep track of for one thing.  Plus it's hard to stuff gluten into a whole tater.  Unlike processed foods like your taco seasoning where they can hide anything they want in it.  Gluten is very popular in processed foods as it helps things stick together and adds some flavor.  So many processed foods are off limits to us unless they are marked gluten-free.

 

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[nvsmom]

They are micrograms.  I have been on this high of a dose since I was pregnant with my son, he just turned 9.  My endo wants my TSH to be between two and three, but it seems I can never get there. My FT4 is always normal so we don't up the dosage.  Maybe that will change once I start absorbing more, maybe I am having a problem absorbing the meds also? I had the radioactive iodine so we had a really hard time getting my TSH regulated after that. It was >100 for months, I was miserable.  But when I was diagnosed my TSH was undetectable and my FT4 and T3 were too high to even titer out to get a result ( I know, I did the testing at work one night trying to figure out what was wrong with me lol). The doc that diagnosed me said I was hours away from a thyroid storm.  I used to be a Med Lab Tech but was so sick I couldn't function anymore.

I lost a bunch of weight before my diagnosis, I had gained a lot of weight ( unexplained and about 50 lbs) about a year before I got pregnant with my daughter.  The week before I left the hospital I had lost 30 of that.  BOOM, gone.  Then after the iodine, I gained >100 pounds.  In the last three years I have lost 166 pounds, more than I now weigh. Nothing I do keeps any weight on.  I eat as much as I can, just blah.

 

You might want to consider taking some T3 in addition to your T4 meds, or try some natural desiccated thyroid (like Armour or Erfa's Thyroid).  It could make a big difference, and T3 will drop your TSH.

 

I was on a full replacement dose of Synthroid (around 180 I think), and we could barely get my TSH down below a 3 - I felt the same as I did when my TSH was much higher , and my FT4 and FT3moved up a bit, but it still sat in the bottom 25% of the normal range (it was never out of range even when I felt my worst).  My doctor refused to try any T3 or switch me to NDT so I found a doctor who would give it to me - first time in my life that I ever doctor shopped, and I am sooooo glad that I did. I am now on 150 mcg (I forget the unit) and my hypo symptoms are gone. My TSH is too low for most doctors (around 0.01-0.1) BUT my Free T's are at about 70% of the normal range and I feel so much better than I did.

 

Most doctors firmly believe that a synthetic T4 is fine since we can convert T4 to T3 (our thyroid mostly produces T4) but it doesn't seem to work that way - it didn't for me.  Maybe there is something wrong with me, or maybe synthetic T4 doesn't work for me (why they think that one drug will work for everyone is a mystery to me) but I found what works now and that's all that matters.... Although doctors freaking out over my low TSH is sometimes annoying since I have absolutely no hyper symptoms.

 

I hope you find the answers to the weight problem, I was the other way around, I tended to hold onto weight and going gluten-free helped fix that.  Best wishes!

[NatureChick]

Beth, to answer your follow up question about not absorbing nutrients while waiting for digestive damage to heal - yes the damage would slow things down compared to someone who had less damage to start. But some of your supplements don't require digestion. B12 supplements dissolves under the tongue, vitamin D your body makes itself after exposure to the sun, and magnesium you can get through your skin if you go the epsom-salt route. For the others, I think that variety in your food sources is a good way to help the absorption, for instance, how you absorb calcium from a juice would vary from how it was absorbed from a solid food. You have no idea what is happening inside, so variety means that if one digestive method is failing, another might do the trick. 

Also to give you hope about the speed of healing and how long it will take to start feeling better, damage to the digestive system is not uniform and flat, rather patchy, in both the way the damage happens and heals. Though it will take a long time to get to 100%, that doesn't mean that you won't feel noticeably better much sooner.

[beth01]

I already do feel noticeably better already, two months ago was non stop puking, pain, migraines, and other unmentionable things bathroom related.  I am much more regular, don't have to take any stool softeners, haven't had a headache in months ( at least nothing Tylenol didn't fix), the brain fog is barely there ( except for a few mishaps), no more joint aches and muscle cramps, it's better!

 

About the foods, some people say go whole, some say foods labeled gluten-free are safe and other say they aren't.  I guess these are things I need to figure out myself. Sometimes it's just all so overwhelming.

I really appreciate all the responses! Thank you.