mslee

Since cutting so many foods out of my diet I've been trying some new things a couple have caused problems...

Last night I made clams and mussels bouillabaisse (it was mostly mussels they cost less)

Today I feel sick like never before, mostly very very weak and limp. Very weak, has anyone had this experience? Not vomiting or D, just very dizzy.

I bought them from wholefoods, talked to the fish guy he said they were good mussels and fresh, they tasted great. made them with celery/thin sliced carrot/water/white wine

The only allergic type reaction I have ever had was from eating sun-chokes (sunflower tubers) baked in coconut oil. My mouth & throat got swollen & I was itchy everywhere, became hard to breath. I took an antihistamine to calm it down and it helped.

Still not sure if it was the coconut or the sun-chokes that did it ...too afraid to test and find out.

Everything else seems to be more of an intolerance.

(I should probably be less adventurous at the grocery store but I've grown so tired of the same old same old.)

I made an allergist apt for next week to hope to find at least the worse offenders...

any tips on what exactly to request?

The staff did say the Dr is familiar with Celiac.

ok, crash time

Thanks!!!

Month 1 -

Sick as a dog, lived off what felt like baby food. Apple Sauce, broth, rice, soft bland veggies, chicken breast, chicken breast, chicken breast. Lots of fruit until yeast became a problem. Nothing greasy, nothing spicy,no citrus, no dairy, no juice, careful not to bend over or sleep after eating. (those last 2 helped alot) Got rid off all wheat products in my home, all seasoning, sauces with questionable ingredients, or MSG.

Tried substitute flours but something in them was not ok for me.

started to feel better and better everyday! Better than I ever had in my life in fact!

Month 2 -

Messed up, I was feeling so much better slipped up on some spicy foods, a little dairy. Sick again. Back to the "baby food"

Month 3-

Started to feel better again but feeling sluggish, have those dizzy days, seems like there is something I have missed. Working on finding it. Soy was a big one, thats out for sure. Soy milk out, Rice milk too risky thats out too. Still looking for hidden sources.

oh yes, I found this link

Open Original Shared Link

sounds like hay is an issue, good to keep in mind this fall!

Yes it's been a lifelong dream to get out of the city, taking baby steps to get there

Moved from Southern California to Texas, Colorado is next...they have some great schooling options for sustainable agriculture. That just might be where we settle already know someone there with a successful organic farm. CA, UT, NM and Prescott AZ are other options.

If I can't buy safe food I will just grow my own! I have a magic green thumb!

Hi

Maybe we could share some odd symptoms that we had before diagnosis? I was fairly educated about health and nutrition, a pro at seeing docs, & being a human guinea pig...but had never heard of Celiac prior to my DX.

Looking back there were clues...

* I noticed as a teenager, every time I ate toasted bread my nose would tickle.

* in my 20's I noticed beer was becoming a problem, I couldn't drink it! It made me feel instantly full and bloated.

*every time I ordered a sandwich or burger, I would tear it apart and eat as little bun/bread as possible

* pizza, eventually became inedible

*trying to eat healthy I started buying all wheat pastas, that was the last straw & when I finally realized I was sensitive to wheat.

But still at that point had heard some people were sensitive to wheat or "allergic" but I had no idea how much damage it could do to me. Guess I know now!

Just so thankful they found it!!!

Move to FL. Lots of land in the country and we dont do wheat here.

ooo The Hubby & I just ran off to Key West & got Married! Took a nice long road trip home, had a blast Florida will always be a special place for us to visit!

I am a Western Girl at heart and don't think long term would want to live anywhere else. Always wanted that little adobe house and horses! One more little obstacle to work around.

ArtGirl:

Hmm maybe horses would like cotton bedding LOL, I will have to have a wheat free farm.

dilettantesteph:

agreed, best to stay away from the hay! & we were just talking about finding pumpkin farm, guess I will have to stay off the hay ride.

Hi

I have alot of the same symptoms as you do.

I am finding I am VERY sensitive to cross contamination, many foods say gluten free but somewhere in small print will say "processed on machinery that also processes wheat, soy, tree nuts etc"

New to this but I've tested it and soy and dairy are def. no-nos! (feeling the results big time today!)

Dairy is probably temporary, the Soy seems just as bad if not worse than gluten.

Spicy or acidic gives me heart burn, I've been living off of rice, chicken breast, fruit,veggies, applesauce, nuts, tuna, carrots, polenta, & broth. Basically very very bland food until I heal. I screwed up a couple of times and tested it, it's too soon to do that I have learned.

Whole foods made from scratch will be your best bet. (it is not easy I know!) get rid of anything containing MSG that stuff is no good, taking it out of my diet has help some of the neuro symptoms. replace with herbs.

oooo I just found Larabars, they are satisfying and yummy! (found at whole foods)

I am waiting for lab results, testing for malnutrition/vitamin deficiencies to come back , waiting on my follow up liver biopsy apt...what they have told me so far is that the celiac caused my other autoimmune issues... but that too I am waiting to talk to more Dr.'s about.

waiting, waiting, waiting, jumping through hoops, making phone calls, getting stuck with needles, talking to some real jerks, waiting, and waiting for the insurance company to tell me they wont pay for anymore tests.

Lyme is a whole other issue, Thyroid is another issue, Yeast overgrowth can be another, most of your neurological/anxiety issues are probably from consuming something you shouldn't be. Did they check your B 12??? (I have heard that's a big one for muscular problems) This board has been a huge help!

hang in there!

good luck!

hmmm,

anyone here a farmer?

how does that work out?

can you have a wheat free farm with animals...guess just like us, feeding them alternatives would be more costly...unless you had the acreage for them to have a natural diet.

Thats part of my therapy get the heck out of the toxic city once and for all....guess hay bale and adobe is probably out. Guess I should avoid "wheat country" Will have to adapt and make adjustments there too.

ah, nothings easy!

That dream of land in the country is one thing this illness will not take from me. nope!

So here are a couple questions...

I'm guessing it's best for us Celiacs to avoid relocating to a part of the country where wheat is grown, or near a food factory that processes it???

I know that we need to ingest it to have most of the problems but even being near wheat products I get very itchy, my nose, ears cheeks all go crazy.

What about straw bale housing or adobe??? etc...etc..

Thanks all!

I'm getting as much blood work testing done as I can with my insurance waiting for results. That will give some idea of where to go from there. Yes I think the LLMD and further tests will probably be the next step.

They have pretty much told me they have done all they can for me with Western Medicine, that "I should seek out studies and research centers in San Antonio & Huston." at least here in Austin there are lots of options for alternative medicine. We will probably be in Colorado this time next year that will provide more options.

Can't believe how controversial all this is AND how little they really know. It's terrible that clearly sick people can't get the help they need!

I saw my Internist and requested all these tests, I was happy she seemed fine with ordering them based on my condition...so now just waiting for the results. Going to have my immediate family request the same plus celiac tests.

Lyme is something else worth looking into too, good grief!

Thanks again!

Hi

Seem to be tireder than ever the last few weeks. Anyway, I keep getting sore patches inside my mouth - look a bit red but wouldn't call them ulcers with the skin all around going white and peeling away. Does anyone else get this and know what causes it ?

Also, I love a particular type of sheep's cheese- it's a hard cheese with rind around it and on the last 2 occasions that I have eaten it my throat has felt swollen and deep inside my ears I have had what can only be described as a sort of itchy feeling (!!). I have been eating this for the last year but have only felt this this week after eating it.

Thanks

This is what my GI told me,

When you are newly dx the damage done to your intestines prevents you from being able to digest lactose, once your insides heal those parts will be repaired and you can consume dairy again..if you choose to. He said this can be 6 months to a year.

Sometimes with the gluten intolerance comes casein intolerance, casein is a protein in all dairy it is very similar to gluten in structure, so sometimes the body mistakes it for gluten and reacts.

It's weird how these can just develop I had always eaten cheese, after taking out gluten it bothered me, I tried goat cheese and had a terrible reaction, tried butter with no additives, bad reaction...just gonna give it time, after we heal leaky gut shouldn't be as much of a problem.

The itchy ears, and tired feeling are signs for me that I have eaten something I shouldn't be. Mouths sores are a symptom of celiac.

I am finding there are other lots of other foods that can be a problem & it's not so easy pinpointing them...

This Section has some very helpful and interesting info:

Open Original Shared Link (leaky gut/ other food intolerances)

not fun at first but you will feel better!

good luck!

Did the Lyme test give a reference range? It was not a Western Blot ..... but even if it had been, most WB's are not very accurate, they leave out critical bands .... it would need to be IGeneX.

Lyme is unlikely to have a false positive.

Often chronic infection and autoimmune problems go hand in hand due to the immune system being on constant alert due to the infection.

I see you also tested positive for Lupus, that is not uncommon for Lymies.

That rheumy did you no favors not following up on that test.

Thyroid issues are common with Lyme .... I am hypo myself. A skinny hypo, go figure! And, I don't have celiac, so that's not the reason for me.

hmm

it said 1:28 was normal, but my results were in the out of range column w/footnote

Footnote says:

less than 1:28 negative

1:28 Indeterminate: suggest repeat if clinically indicated

greater than 1:28 positive

I see my Internist tomorrow, I was going to have her run labs for malnutrition vit/mineral deficiencies, test my thyroid, I could request Lyme and Graves too. Although it sounds like it might not do much good if I need an LLMD. I did get a name for one in my general area but of course they don't take my insurance.

Need to discuss with my Rheumatologist whether he thinks the Lupus is a correct DX or if it was Celiac being mistaken for Lupus. They just don't seem to know a whole lot about any of these issues.

It was suggested today I seek out Dr.'s preforming test studies for Lupus because they have tried all treatments and had no luck, there have not been advancements in treatment in like 40 years!

Are Thyroid issues fairly easy to treat or are they as complicated as everything else???

Thanks!!!

Ok

I am just trying to wrap my mind around all this, Ive been going through my old medical records and I found that they tested me for lyme once when I first started seeing an Rhuematologist.

The test & result was:

Lyme AB IGG Serum 1:28 with a note saying to re-check, but they never did.

I know I did get bit by a tick once for sure, and I am an outdoors person have spent alot of time traveling the country, camping, fishing, hiking.

But I have all this autoimmune stuff going on too, are there false positives in lyme?

I feel kinda dumb not decoding my blood work sooner and asking these questions, guess it took getting the gluten out of my diet to have the energy and mind clarity. There abnormal results left and right! How could these Drs not say anything!

grrr

My liver biopsy just came back positive for autoimmune hep with minimal inflammation. It does sound possible removing gluten may help my liver heal as well. Wait for the follow up to know for sure.

Thyroid is off as well

Oh My

In the midst of my exhaustion I have stumbled onto this thread.

I have almost every symptom listed on that first page.

Surely this is not something else my Rheumatologist has over looked. Will do more research, is this something easy to overlook???

Thank you guys for so much good info on here!

"Last doctor I saw recommended I do a diet restricting gluten, dairy, legums, corn, eggs and soy

I really don't know what I would eat if I went off all of the items and have already dropped 45pounds since starting the gluten diet and don't feel it would be healthy to loose more. In addition I have genetic high cholesterol so am already not eating any fatty foods.

Has anyone had vague joint/muscle issues as a result of a food intolerance or theese problems after starting gluten free?"

My symptoms have been muscle and joint pain, fatigue, weakness, dizzines, irritabilty, anxiety, depression, tingling, numbness in arms and hands, migraine headaches...These could be from malnurtion from the celiac...(some on this board have suggested B 12 and Magnesium, and that makes since.)

The symptoms that have gone away on a gluten free diet are: nausea, vomiting, bloating & the dreaded "D"..these come back if I accedentally eat gluten, dairy, or soy.

Possibly after I heal most symptoms will go away.

Although I have been Dx with Lupus & Fibromyalgia, possible one or both were misdx but am finding I have to be very persistant and a little pushy with doctors to get anywhere.

For Lyme disese is that something they can find in your blood if it was something you had years ago? Does it cause problems for life?

Working on getting all these blood tests ordered.

I'm wondering about these too.

Seems like they both cause problems, I've been using rice milk and it seems ok

this is so weird, really we just experiment with all these things until we can tell what exactly is the problem ingredient???

I tried making an allergist apt and they had never heard of celiac, the lady wanted to know if it was something they put in food. They other office I called said they had never heard of it either and that if any of my allergy tests came back neg. my insurance would not cover them.

guess I have more phone calls to make.

Is there any other option???

Yes!!!

Most simply dismiss it, luckily my Mom and Sister seem to be interested which is good because I don't doubt for a second they have it. They have struggled with terrible allergies all their lives, it was always strange I never really had any until this.

Well I had been looking forward to my 1st apt with my Rhuematologist since my Celiac Dx tomorrow...

got home today and there was a message from them saying there had been some confusion with my insurance and they went ahead and canceled my apt until it could be straightened out.

I was pretty sure it was time for a new Doc anyways, this one didn't seem too familiar with Lupus, who knows about celiac.

So the question remains.....

Does Celiac cause Lupus?

From what I have read there is always a trigger for Lupus I''m guess the trigger could be Gluten???

Will post what my Dr. says...once I get in

Goodnight, thanks for the kind words and info!

thank you for the advice!

I had my liver biopsy and am waiting on results, have more apts to make, tests to order, and new books to read.

thanks I appreciate the input!

Shame on me for not thinking of this sooner,

If there is anyway I can help anyone suffering from Ike, please let me know I am in Austin TX.

gluten-free care package maybe, help with pets, or finding lodging????

let me know,

take care!!!

~alison

Please stop the folic acid, and get tested for B12! Folate supplements can mask a severe B12 deficiency, and the pins and needles as you describe are classic book for a severe B12 deficiency. The damage may be permanent if you delay treatment...

ok thanks!

So far I don't think any of them have ordered vit/mineral deficiency tests when I brought up malnutrition with my GI he said "yes, yes, there are lots of things caused by the celiac but you are not eating gluten and they will get better"

I plan on going back to my general care Dr (an Internal Med Dr) after my apts with specialists are done and ask her to test for deficiencies and my thyroid.

Thanks for the input!

I am finding so much useful info here!

This is all so amazing! it's like the puzzle pieces that have been missing my whole life (and those of a few very close family members & friends) are all coming together.

Soooooooo many Dr.'s with no answers!

I've had 2 MRI's one in about 2004 and one just a few months ago, with contrast injection, and the needle nerve testing later. Not exactly pleasant but not painful.

All showed nothing, yet I have numbness, tingling, loss of control of hands and arms, nerve twitching, and always always the headaches.

At my follow up apt I told my Neurologist I was just Dx with Celiac, "hmm interesting", he said nothing about the relation between celiac and neurological problems.

When I ask any of my Dr.'s about supplements the usually roll their eyes and say they are a waste of money....and MRI's are not apparently.

(although I do have peace of mind there is no Brain tumor that's a good feeling!)

2 have recommended Glucosamine, and fish oil...My GI said the folic acid is a good idea

I'm doing as much research about all this as I can (my brain will only absorb so much at a time)

I've started

B vitamins

Folic Acid - because I am on sulfasalazine for Colitis, which disrupts your body's absorption of F.A.

magnesium

calcium citrate w/ D

glucosamine chondroitin w/bosswellia

E

caprylic acid - seems like this REALLY works on yeasts

all must be introduced slowly...because I can barely get enough food in me but I think I'm on the right track.

Goodness!

So much information!

I also take Magnesium (for migraines) and Calcium Citrate (because calcium is good for me). They seem to be helping I have been told Calcium can help with pms pain and also helps to relax you. My GI doctor said they are fine but keep in mind that magnesium can cause diarrhea if you are taking too much.

my herbal healing book recommends:

lemon balm (make tea), ginger( tea or in food), basil (tea or in food), valarian(sup.), and lavender (oil) as the top herbs for insomnia

although if you get pregnant I would make sure your it is ok with your dr.

good luck!

oh yes they did a colonoscopy and an endoscopy at the same time, they also found colitis so I'm glad they did it.

My husband thought it was going to be unnecessary and I was putting myself through un due stress but I told him I thought it would give me answers I needed, and so far it has.

The years of guessing and being doubted were horrible, there are still skeptics in my family...skeptical that is possible they could have it too

"honey if I wanted to feel better I would quit smoking and drinking".... they have no idea how sick I have been and the effects it has had on my life.

Thank goodness to finally have some unquestionable answers!!!

It is a little scary at first, I had never been put under and was very nervous.

I think they could have done a better job putting me under, they let the IV slip and I started bleeding, they started yelling it felt panicked, the anesthesiologist made some joke about inserting a Gov tracking device...and I was out.

After talking to my aunt and cousin who work in the medical field (physical therapist & anesthesiologist) they said to let them know you are nervous and to tell them to put you under slowly. My other cousin also said that I imagined the "joke" ...what does that say about me??? well i am still mostly sane

But it was ok, it wasn't an emergency situation or anything I just think they could have been more professional.

I had been fighting off a migraine for days before that, after the procedure I got the best sleep of my life and woke up with no headache.

It did not hurt at all, my throat was a little sore, if I ate anything that was not very bland I got heart burn that first month and a half. Basically lived on plain chicken breast, plain rice, plain beans, and lots and lots of fruits and veggies. Nothing spicy or greasy.

I have a Liver Biopsy next week I am a little nervous but I think thats normal.

I don't think my GI expected to find Celiac, his assistant gave me the blood work forms and he came in and said "thats not necessary" and tore them up.

After the biopsy showed Celiac he ordered the blood work which also came back positive.

I think you have gotten some good advice here from what I've heard the damage happens over a period of time. If there is damage to your digestive track they will see it. No reason to make yourself sicker....I had been off gluten about 2 months before he ordered the blood work and it still came back unquestionably Positive.

~ although keep in mind everyone is different & I am still new to this too. Maybe you will get some more feed back from those more experienced???~

Good Luck!

Hang in there!