So Frustrated! What Would You Do?

[Ox on the Roof]

I just don't know what to do anymore. I've been sick for so long! I typed my whole life history on another post somewhere, but the jest of it is that a year and a half ago I went from amazingly healthy to deathly ill. The symptoms were neuro and gastro. After about eight months and ten doctors, it was finally discovered that I was B12 and D deficient. Getting hopped up on vitamins (high-dose D and injecting the B12) got rid of almost all the neuro stuff, but the gastro continued.

If I were to list all the meds I've tried and the tests that have been run (and my gallbladder removed, to boot)...well, no one would want to read it. So let's just talk Celiac, since this is a Celiac forum.

The GI ran an endoscopy (over a year ago) but only biopsied my esophagus (GRRRR!). Two weeks later he ran a Celiac panel that showed negative (it did not give me actual numbers, just said <10 is negative, and that my results were <10).

Now, a year later, my GP ran another Celiac panel. <20 was negative. My results were 1 on the first test (IgA) and 2 on the second (IgG). So those are kinda weird results. I don't know if those were MY numbers, or the lab didn't fill in the 1 and 2. Anyhow...

So I decided to try a gluten-free diet on my own. It's been two weeks yesterday. I've only gotten sick three times; two of those were at restaurants and I know that I ingested gluten. But this last one...I had been SO careful all day, and I have NO IDEA how I would have ingested it!

So here are my options.

1. Continue the diet, give it time. (Downside - if it isn't Celiac, I am STILL SICK, and if it is, I will not have an official diagnosis.)

2. Go back to the GI, who prescribed me Elavil last time I was there, and push for further Celiac testing. (Downside - I'm pretty sure he thinks I am swallowing air, which is BEYOND frustrating, and if he does another scope, I'll be paying even MORE medical bills, which I am swimming in already.)

3. Go back to my GP and tell him I'm still sick; have him clarify the numbers of that last test. (I guess there isn't a downside to this, but I think he's about at his wits' end with me.)

What would you do, and why?

I really appreciate this forum, if for nothing else, that most of you know what it's like to try to live sick for a long time. I stay home with my three little ones (8,5, and 3) and I homeschool them, which is a joy for me. But being so sick makes it hard to take care of them. Praise God I haven't gotten behind in schoolwork and no one has killed each other!

[GFreeMO]

I just don't know what to do anymore. I've been sick for so long! I typed my whole life history on another post somewhere, but the jest of it is that a year and a half ago I went from amazingly healthy to deathly ill. The symptoms were neuro and gastro. After about eight months and ten doctors, it was finally discovered that I was B12 and D deficient. Getting hopped up on vitamins (high-dose D and injecting the B12) got rid of almost all the neuro stuff, but the gastro continued.

If I were to list all the meds I've tried and the tests that have been run (and my gallbladder removed, to boot)...well, no one would want to read it. So let's just talk Celiac, since this is a Celiac forum.

The GI ran an endoscopy (over a year ago) but only biopsied my esophagus (GRRRR!). Two weeks later he ran a Celiac panel that showed negative (it did not give me actual numbers, just said <10 is negative, and that my results were <10).

Now, a year later, my GP ran another Celiac panel. <20 was negative. My results were 1 on the first test (IgA) and 2 on the second (IgG). So those are kinda weird results. I don't know if those were MY numbers, or the lab didn't fill in the 1 and 2. Anyhow...

So I decided to try a gluten-free diet on my own. It's been two weeks yesterday. I've only gotten sick three times; two of those were at restaurants and I know that I ingested gluten. But this last one...I had been SO careful all day, and I have NO IDEA how I would have ingested it!

So here are my options.

1. Continue the diet, give it time. (Downside - if it isn't Celiac, I am STILL SICK, and if it is, I will not have an official diagnosis.)

2. Go back to the GI, who prescribed me Elavil last time I was there, and push for further Celiac testing. (Downside - I'm pretty sure he thinks I am swallowing air, which is BEYOND frustrating, and if he does another scope, I'll be paying even MORE medical bills, which I am swimming in already.)

3. Go back to my GP and tell him I'm still sick; have him clarify the numbers of that last test. (I guess there isn't a downside to this, but I think he's about at his wits' end with me.)

What would you do, and why?

I really appreciate this forum, if for nothing else, that most of you know what it's like to try to live sick for a long time. I stay home with my three little ones (8,5, and 3) and I homeschool them, which is a joy for me. But being so sick makes it hard to take care of them. Praise God I haven't gotten behind in schoolwork and no one has killed each other!

Well, first, I hope you feel better soon. I would def. stick with the gluten free diet. You said it made you feel better. The time that you said you got sick and were very careful, you probably got some gluten from cross contamination. A pot or pan that had been used for gluten or a jar like peanut butter, jelly, butter etc that had crumbs or a cutting board..There are sooooo many ways to get cross contaminated.

If the diet makes you feel better, stick with it. Doctors don't know everything. Listen to your body! If gluten makes you sick, don't eat it.

Give the gluten free diet at least 3 months, if you don't start feeling better, go back to the doc but for now, I would stick with it and be very careful of cross contamination. You might have to give up dairy as well and stay out of the restaurants.

Good luck and feel better soon!

[Salax]

I would stick with the gluten free diet and try a casein free diet as well with it. I guess my rationale here is that what could it hurt? If it works then you know what

[Monklady123]

I would definitely stick with it longer! It takes awhile to get "detoxified", plus if you've accidentally gotten glutened several times you have to add extra into that healing time. If possible -- and it might not be with the holiday season -- try not to eat out for awhile. If you can't then I'd say do your best between now and the New Year's. Then after everything settles back down and life goes back to normal (lol) try eating a very simple, gluten-free diet at home. Cooked by you. Don't eat out, don't go to anyone's home to eat unless you take your own food. If someone questions it just lie and say "my doctor has me on a strict elimination diet for allergies". It's only a teeny lie.

Hang in there and it will get better!

[Skylark]

I would stick with the diet too. False negatives are common enough on the tests. If you've only been at it two weeks and ate gluten a few times anyway, you might not feel that much better. Give it a couple months truly gluten-free, eating whole foods you cook yourself and see how you're feeling.

[txplowgirl]

Hi There Ox, I'm sorry you are still having issues. Please hang in there, it took some of us 2 to 3 months or longer before we started feeling better.

Do you have a gluten free household? If not then you may have a harder time because you can be continuously cross contaminated, expecially by your little ones.

Have you replaced your cooking pans, toaster, collander, cutting boards, etc. your hand lotions, toiletries, shampoos and conditioners,check all your meds and vitamins, a lot of us react to gluten free foods, so try to stick with whole fresh foods for a few weeks, plain meats, vegetables, fruits, brown rice, etc. If you have indoor pets, check their foods for wheat, if your significant other is not gluten free he can contaminate you if he hasn't brushed his teeth.

These are just a few little things that might help you. So, again hang in there and I hope you get to feeling better.

Vicky

[Ox on the Roof]

Thank you all so much for the responses. It's been a hard day today and ya'll are very encouraging.

Yes, I am probably CCing myself all over the place. I've tried being very careful, but Tx is right. It's hard with little kids in the house! It's like a PB and J free-for-all. Is it not enough to wash all the cooking equipment very, very well?

I guess the really frustrating part is not knowing if this is really what is making me sick. But everything else has been eliminated. So when I get sick again, I think, "Have a CCed myself, or is it really not the gluten after all?"

Could someone elaborate on the casien? Does that usually go hand-in-hand with Celiac? I know for sure I am lactose intolerant, but usually more so with plain milk. Cheese products don't seem to bother me. (Or DO they? See, guessing AGAIN! )

Again, thanks so much. This has been a difficult season in my life. The other three times I was sick for extended periods of time, I at least got a baby out of it!

[txplowgirl]

Yes, casien can do that as well as soy too. I would eliminate that as well, The reason we suggest new pans at least is because if they are scratched, gluten can be hiding in those and there is no way you can wash them out, same with the collander and wooden cutting boards.

Also, you may be going through withdrawal, that can last for a while and then one day you'll wake up and feel better. You will have off and on days. One thing I would suggest, is when you make those pb and j sandwiches, use sugical gloves that you can get at a pharmacy.

I found out that when I made sandwiches for my ex significant other no matter how careful or how much I cleaned after, I somehow would get cc'd to the point, I would get D within 24 hours. After I started using the gloves I was ok. Just a thought.

[Salax]

Yes, casien can do that as well as soy too. I would eliminate that as well, The reason we suggest new pans at least is because if they are scratched, gluten can be hiding in those and there is no way you can wash them out, same with the collander and wooden cutting boards.

Also, you may be going through withdrawal, that can last for a while and then one day you'll wake up and feel better. You will have off and on days. One thing I would suggest, is when you make those pb and j sandwiches, use sugical gloves that you can get at a pharmacy.

I found out that when I made sandwiches for my ex significant other no matter how careful or how much I cleaned after, I somehow would get cc'd to the point, I would get D within 24 hours. After I started using the gloves I was ok. Just a thought.

I agree as well. Yes, casien and/or/both lactose intolerence seems to be a common thing in us celiac's that experience issues with. Expecially in the begining of the diet. We tend to stop eating that so we can heal. I believe casien can agravate the gut and allow the gut not heal as quickly. When the gut is repared, some of us can add it back in and some cant..just depends on your body.

If you can take out soy too that might help. I would try to eat as much whole foods a possible. That should be the bulk of your diet. Meat, eggs, fruit, veggies, nuts, beans and possibly whole organic type grains like rice, quinoa. Potatos and corn are ok, but I would eat them as el-natural as you can get them. I would eat less carbs, they are hard on the body as a whole. See how you feel after that. If you start to feel better keep it going and after a few months, maybe a year or so try reintroducing casien. I was able to tolerate casien after about 5 months off it. It all depends. We just need to get you healthly and feeling good first. Then you can try casien and soy again if you want.

[Ox on the Roof]

Today is BETTER! I ate some brown rice with apple and pecans chopped into it for breakfast today. Not bad. Avoiding dairy is going to be hard, though. (I did put a little butter in it.)

After thinking through Tx's comments, I may have figured out how I would have gotten cc'ed. I did make myself a separate dinner on Monday night, but I made it in my Teflon pan, which is scratched...and then put the leftovers into a plastic container, which was scratched...then ate it again the next night. That's the only thing I can come up with!

It's hard for me to believe that this could cause me to get sick, but you guys have obviously dealt with gluten problems for a longer time than I have, and so I have to listen to your wisdom. Although you have to know that for a newbie, it sounds so radical to think you could get it from kissing and such. But I don't doubt you guys, because I know how bad it is to be sick and have people think it's in your head. GRRR!!!

Anyhow, thanks again.

[Skylark]

Don't lose your mind about the CC to that extent. Most folks are not that sensitive. Sometimes we get sick while we're healing from other food intolerances. Celiacs have "leaky gut" from the damage, so allergenic foods like corn, soy, or nuts can get into the bloodstream before they're fully digested and you react. I used to react to shellfish and soy for that reason. Once you're healed a lot of the unexplained reactions will subside. Casein is a special case, as it has a gluten-like stretch in the protein that some celiacs cross-react to. Again, once the antibodies are gone many celiacs do find they can tolerate casein.

[txplowgirl]

I'm glad you're feeling better. Some of us are sensitive enough to get cc'd by the plastic and teflon pans. Since I have been by myself I've not had to worry about the platic, it was when I was with my ex that I was getting cc'd almost constantly. Not fun at all. Anyway, i'm glad you are starting to figure it out.

[Ox on the Roof]

What is this "leaky gut" that you speak of? Off to do another search...

(Can you tell I was a librarian in my pre-mommy days? )

[GAD.. AKA unsure....]

Hi Ox - Day 4 of gluten free and last night was hell! MAJOR Anxiety.

I hope that you stick with things and carry on until you are better. Putting the lill ones on gluten free diets wont hurt them, and may save you! - just a thought.

Stay strong

A x

[txplowgirl]

Putting the lill ones on gluten free diets wont hurt them, and may save you! - just a thought.

Gad does have a good thought there, since you are home all day with them that would help tremendously for you, they will be healthier. Going gluten free will not harm them at all, in fact it may help them also, because gluten can cause ADHD, as well as other childhood issues that you may not realize gluten was doing to them.

Try it, you might like it.

[Skylark]

"Leaky gut" is something that can happen when the intestinal cells aren't healthy. The small intestine has a thin layer of cells that provide the barrier between the body and food. Part of that layer is also mucous and beneficial bacteria. In conditions of inflammation, there can be alterations in mucous and intestinal bacteria, and physical gaps between the cells that let in allergens and toxins that would not normally make it to the bloodstream. It's an idea that allergists and holistic medical practitioners have been familiar with for a long time, but we're just starting to see some mainstream research about how it happens and the health consequences.

It will go away naturally. Since healthy bacteria are part of what keeps the intestine healthy, you can help the process by eating probiotic, fermented foods like live culture yogurt (if dairy is OK), sauerkraut, tempeh, miso, and by taking a gluten-free probiotic for a month or two.

[VioletBlue]

You mentioned a prescription. Some prescription drugs and over the counter products can contain gluten. That's another thing to consider and check out, like you needed one more thing.

This whole gluten free thing has a learning curve to it. You won't know everything in the beginning and you will figure it out as you go along and get better at it so cut yourself some slack on the bad days and rejoice in the good days.

[rosetapper23]

To be honest, you might even be getting cc'd from kissing your kids after they eat their PB & J's. For many of us, it doesn't take much to get sick.

Regarding "leaky gut," someone started a thread yesterday on an interesting site that discusses auto-immune diseases. It discusses this condition and was written really well. Hre's the thread:

[Skylark]

Scroll down a ways to get to the good article. The one at the start of the thread is pretty inaccurate.

[Ox on the Roof]

Hmmmm. This leaky gut thing is interesting.

I actually got stricter with the diet (being more careful to use my good pans and storing things in glass containers) since I started this post two days ago. So far, so good. I don't feel great, but I feel better, and that's enough for now.

I also went ahead and made an appointment with my GP for next Friday. I want him to clarify that the lab results were accurate (those numbers are just weird!), and tell him about my experience so far going gluten-free. He's the only doctor who doesn't act like I am making stuff up, so hopefully he'll have some thoughts.

As for 'scripts, I am only taking vitamins now. I went off the Lexapro back in April, with no withrdrawals at all. In fact, I got relief from a bunch of crazy side effects (tapping sound in my ears when I would lie down, MORE nausea, apathetic attitude about everything). Now I am taking 50,000 units of vitamin D once a week. Anything less makes my labs plunge back to deficiency. And I take 1 cc of B12 every other week via injection. I also take a multivitamin, although it's just the store brand and is probably a waste of money.

And my kids. This is hard for me. I don't kiss them on the mouth, and I do wipe their faces off after lunch. For me, I think the biggest struggle in all of this is to find a balance between being well and getting crazy paranoid. I have CDO tendencies (that's when you are OCD but have to have it in alphabetical order ), so I could see myself going off the deep end. Of course, being sick for so long cured me of a lot of that. When you are having trouble choking down every meal or getting out of bed, who cares if the toilet needs scrubbing?

[mushroom]

I have CDO tendencies (that's when you are OCD but have to have it in alphabetical order ),

:lol:

This one totally cracked me up, spat out my coffee on my keyboard

[rosetapper23]

I feel for you...what a difficult situation. Is there any chance that once you're convinced that gluten is a major culprit behind your symptoms that you could serve only gluten-free food to your children? If you follow a natural diet and make your own bread, perhaps there would be less stress about contamination.

If you're not already doing so, I would strongly recommend that you take L-Glutamine to start healing your gut. The product that helped me the most (and which contains L-Glutamine) is UltraClear Sustain from Metagenics. It's "medical food" that "manages leaky gut syndrome." After taking half the recommended dosage of the powder in my smoothie on a daily basis, I saw the remainder of my celiac symptoms completely disappear. An integrated-medicine doctor had recommended it to me, as well as Probiotic Pearls, and I was able to discontinue taking it after a year because I became so well. I noticed that this particular product was being touted at the last celiac conference I attended, so it seems to be catching on with celiacs. I began taking it three years ago and had never heard of it before--I can't recommend it enough for people who are having gut issues. I feel like a normal person now.

[eatmeat4good]

I just wanna say that I am only 2 months gluten free and I was rockin along all good and thinkin this ain't gonna be so hard. Well, I was wrong. I got glutened and have been sick all week long. First the sores, then the migraine headache then brain fog and muscle pain and have been in bed most of the week. I didn't believe the part about the kiss either...I mean I believed it but thought Not Me Surely.....Please believe it. They all know what they are saying. I thought one little kiss would be no big deal and it was the kiss of death for a week. Jeez. I believe everything now. And I even wonder about the gluten on the sponge they wash the coffee pot with at work...used to drink coffee with others...now can't even do that. I got a good few weeks of feeling better though before the secondary intolerances and the kiss got me. Now I am a believer and don't ever wanna get CC'd again. I hope you feel better soon. I also hope you put the littles on gluten free...my son is 16 and has had asthma since age 7. Never responded to antihistamines or antibiotics...he would wheeze all the time and had muscle weakness. He has been gluten free one month. New kid with energy and spunk and no asthma. I wish I had known sooner. Did a little research on asthma and it turns out vitamin D deficiency can cause severe asthma. It is clearly the malabsorption. But the Dr. doesn't think asthma is a symptom of Celiac, so won't test him. It's ok though. He did the gluten free for me and he is thrilled with his results. I know I got off topic, but wanted to share that with you.

[frieze]

Hmmmm. This leaky gut thing is interesting.

I actually got stricter with the diet (being more careful to use my good pans and storing things in glass containers) since I started this post two days ago. So far, so good. I don't feel great, but I feel better, and that's enough for now.

I also went ahead and made an appointment with my GP for next Friday. I want him to clarify that the lab results were accurate (those numbers are just weird!), and tell him about my experience so far going gluten-free. He's the only doctor who doesn't act like I am making stuff up, so hopefully he'll have some thoughts.

As for 'scripts, I am only taking vitamins now. I went off the Lexapro back in April, with no withrdrawals at all. In fact, I got relief from a bunch of crazy side effects (tapping sound in my ears when I would lie down, MORE nausea, apathetic attitude about everything). Now I am taking 50,000 units of vitamin D once a week. Anything less makes my labs plunge back to deficiency. And I take 1 cc of B12 every other week via injection. I also take a multivitamin, although it's just the store brand and is probably a waste of money.

And my kids. This is hard for me. I don't kiss them on the mouth, and I do wipe their faces off after lunch. For me, I think the biggest struggle in all of this is to find a balance between being well and getting crazy paranoid. I have CDO tendencies (that's when you are OCD but have to have it in alphabetical order ), so I could see myself going off the deep end. Of course, being sick for so long cured me of a lot of that. When you are having trouble choking down every meal or getting out of bed, who cares if the toilet needs scrubbing?

Are you taking D2 or D3? D3 is the preferred. And I, too, had a good laugh at your OCD line, lol.

[Amanda Lynds]

I came up with a list of foods I thought were bothering me and then went to an allergist. She asked me a few questions, added a couple things to my list, and figured out I was allergic to cow's milk, eggs, celery, citrus, poultry and hazelnuts. There are a couple options for you.

1) go to an allergist.

2) create your own elimination diet. Remember that dairy and eggs cause stomach aches, too. And when you cut them out, remember you have to cut out ALL derivatives of them too... luckily they are both usually labeled boldly on an ingredient list. Just like with gluten you can't just "add a little butter" and think it's okay.

Also, remember, your body reacts to things in it's own way. It could be something you ate yesterday that is making you sick today.