mslee

Hi Guys!

Goodness!

Right now I'm only able to check in every couple days, sounds like everyone is making progress thats great news! So glad you are moving forward!

Don't have a whole lot of input...never heard of most of these treatments prior to finding this thread. It's very interesting ...thanks for the info, I'm trying to keep up and taking notes

Paula the endo and colonoscopy are not that bad, and very helpful to rule things out or find problems I would not have known of Celiac without it. I have mild colitis sulfasalazine seems to really help me, asacol is supposed to be better but is too spendy for me right now. My Grandpa had it too, Grandma said he took the medication got better and it never came back.

Seem to have found at least a safe enough diet to function, I still react to alot of foods but have had a few good days in a row...that's a start!

Are these Dr.s you guys see LLMD's, or???? I will be looking into alternative medicine but not sure which types to begin with. This one book.. What Your Dr May Not Tell You About Autoimmune Disorders by Stephen Edelson MD says to try to find a "Clinical Molecular Medicine Physician" anyone ever hear of that type of Dr???

Happy Saturday everyone, Hope you are having a nice weekend!

~a

that has happened to me a few times over the past 12 years, it was very odd.

almost like things smelled tasted of ammonia...but not quite... hard to describe but strange

never found out the cause but it really could have been nutrient deficiencies my celiac got pretty bad before they found it so i know I was deprived of proper nutrition for a long time

good luck!

...Shay I love your owl! cute!....

Thanks Guys!

This gives me some good resources and leads to move forward with, I really appreciate it!

Nora, I have been severely depressed in the past...like rock bottom... both physically and mentally. And have struggled with depression since a young age. Even all these Drs after the exams make some point of bringing up how depressed I appeared. Or mention depression is probably the cause of all my physical problems. Or want to know why I haven't made any children or have a career yet...and then they want to know why I tear up.

However the past 4 years have been the happiest of my life.

At some point I just snapped out of it...there are far deeper troubles in this world than mine & I can only do my best to help where I can. I cannot fix all messes.

Also these past 4 years I have been madly in love and very happy . Still my body feels depressed...lack of energy, desire or ability to have fun, just drained feeling...but I guess I am getting some answers as to why I have felt this way.

And guess what it was not all in my head!!!

There are physical reasons people get so depressed if only Drs would look a little deeper into what is going on with them rather than handing them a pill that is supposed to make everything ok.

I will be seeing an LLMD holistic Dr here as soon as I am able.

Thanks for the info!!!

~ alee

* When they did your liver biopsy, how many samples did they take? Hopefully at least 3 samples from different areas of the liver, otherwise they could have missed something.

Yes I wondered about that! they only took one sample & they made it sound like that was a pretty serious thing for my body to deal with.

* If you tested positive for the AIH antibodies, you should assume that even if you don't show any damage now, there is definitely POTENTIAL for damage to your liver as long as those antibodies are circulating in your bloodstream.

I really need to find that other set of labs, My GI did say that there is a potential to develop liver AIH

* Does your doctor think that the level of antibodies in your system warrants any sort of treatment?

He thinks that going on the gluten-free diet my liver will normalize. He also said that the Celiac caused my Lupus. I have been needing to talk to Rhumatologist about this but mine dropped me before the celiac DX and I have not been able to find another.

* Maybe you're at an early stage of AIH? You do have some inflammation, right?

My GI wants to see me again in about 3 weeks, I am guessing he will order new blood work at that time, I will go prepared to discuss this liver issue further and ask about the possibility of having damage in a location they did not biopsy.

We are all hoping that the Celiac was the root of my health problems, at this point it's kinda a waiting game to get used to the diet and run more labs...and see more Dr's ....I am so tired of seeing Drs ugh

Thank You for your input, it did sound scary & does happen to people with Lupus I will be cautious about this...keep up on follow up labs. Let's hope going Gluten Free can help us!

It's still kinda hard to tell I'm on my 4th month gluten-free, but overall it seems less painful for me.

Ok i have an question. I have noticed everytime i try to eat like turkey bacon or turkey burgers, i get realy sick. Is turkey high in sulfites or something else that can make me sick.

Everyone,

I had a good day today. I spent an lovely afternoon with my dad. I havent done that in a very long time. Now we are going to decorate for halloween.

paula

Turkey was one of the two meats I tested allergic to, the other was pork. Find it strange the idea of being allergic to a meat. But I know fish and chicken are an issue for many. Maybe it's the soy or corn the animals are raised on??? Kinda taking the allergy testing with a grain of salt more just to give me an idea of what I react to. Still seems bizarre but so does most of this celiac stuff!

thank you andrea!

I started eating gluten free yesterday. Thank God for that. About 6 weeks ago my blood work showed positive for Celiac. My GP sent me to a GI and he did the genetic testing which showed I had both genes for Celiac. Finally I had my endo and colonoscopy yesterday. My GI said he sent biopsies off but he could tell just by looking that my Villi were flat. I am so thankful I have finally been diagnosed and can now feel better. I know this new journey will be difficult at times but at least I know I can feel good in the future.

Welcome! Believe me this is good news and you will feel better!

Hi.. I just had a question because I had a similar endoscopy experience. I still haven't heard the results from the lab analysis yet (see my GP next week for that)... but the GI said he could tell that my villi were flat as well just by looking, and that my stomach was inflamed, and to start gluten free right away.

My question is - does anyone know how they can tell that just by looking? I thought the villi were microscopic. I had no sedation for the procedure, so the doctor talked to me immediately afterwards, but I will kind of in a state of shock from the involuntary vomiting I had just gone through!

Thanks!

I saw pics of mine, looked very slick, smooth and shiny no little waves or fingers. From what I have seen by google searching "cross section of intestine" you can see what looks like fingers or a fuzzy wavy layer

good plan, get those antibodies out of me!

Do you have a diagnosis of celiac?

Lots of Celiacs to have other food intolerances and allergies can develop after taking gluten out of the diet. Sunflower does seem to bother me. Celiac can cause skin problems, joint pain, and neuro symptoms. It's good you are going to touch base with a neurologist. I did, they didn't find anything so I am hoping my symptoms were all from eating wheat my whole life & being deprived of vit & minerals.

You probably want to see a dietitian if you are concerned about not getting enough nutrients from your diet.

I went and had allergy testing done, just to give me some idea of what I was dealing with.

also had nutritional blood work ran.

Following suggestions on here I have found my thyroid to be an issue and that I need more b12 to help with the neuro issues.

Thyroid can cause dry thin skin, there may be some helpful info for you here

Open Original Shared Link

also read up in the other food intolerances section

good luck!

Any favorite books that you have found very helpful to understand all this?

I know many have recommended

Celiac Disease A Hidden Epidemic

by Peter HR Green, MD & Rory Jones

I just finished

The Autoimmune Epidemic

by Donna Jackson Nakazawa

Found it very informative talks about how autoimmune issues are connected and the relation of environment/diet to those conditions.

also picked up

What Your Doctor May Not Tell You About Autoimmune Disorders

by Stephen Edelson MD & Deborah Mitchell

yes no point in dwelling on the past, I am just glad the celiac and everything else is being caught at a point in my life where I might be able to get better. Maybe someday I can say "i used to be sick" rather than "i am sick"

it is very exciting to think i can get better & move on with my living my life!

Oh one more thing about Sulfites or is it sulfates?

Those sensitive to them have an immediate obvious reaction to them is that correct?

I am on sulfasalazine for colitis, have not had any problems seems to help no side effects noticed.

But have always been sensitive to wine.

I like olives, capers, pickled food occasionally if I was sensitive those would all make me sick right?

I am so behind I don't know how you guys keep up with all this info!

Confused, that was very sweet of the school to do for you!

Happy Late Birthday!

I probably posted something about impaired detoxification and issues with metals, toxins, infections, etc. I have severe problems with detoxification...but my liver tests are all normal. Its more of an intracellular metabolic thing....not something that typically shows up in the standard liver tests.

Of course its also possible to have abnormalities show up in liver tests that may be caused by heavy metals and toxicity.....however, these problems wouldnt be identified by the doctors as a reason for the abnormalities in the liver tests.

Issues with heavy metals, etc has to be determined with tests that are specific for that.....and by doctors who are familar with those things and who also have experience with the testing (understanding how to interpret them).

In my opinion toxicity is caused by many things. For example if mercury is causing impaired detoxification...you will then accumulate MANY toxins....its unavoidable in a world where we are exposed to thousands of chemicals. You start becoming sensitive to many things as toxicity in the body rises. The more impaired detoxification becomes....the more reactive we become to chemicals, molds, foods, etc.

I dont think exposure has to be chronic in order to cause damage......it would really depend on the person's genetic make-up. How much exposure to toxins can each person handle? Its impossible to answer because we are all different, have different genes, different vulnerabilities, different environmental exposures, different lifestyles, etc.

Many things that we are exposed to on a daily basis can cause or contribute to the detoxification problems....its not just the heavy metals (although they are a big part of it).

Absolutely! Plastic is a major contaminant. Its better to drink water from a glass container (although they tend to be alot more expensive and more difficult to find).

Also, to avoid worse contamination from plastics dont heat food in plastic containers and dont leave plastic water bottles in the sun. I dont ever leave my water sitting in the car and then drink from it.....I have actually tasted the chemicals and reacted to them. I learned pretty quick to never do that again!

Even people I know who are not sick and who are not sensitive to chemicals can taste the plastic when they leave the water bottle in the car.

Yuck! I've opted not to own a microwave, my Dad used to microwave everything in plastic and I would always tell him thats not safe, but he lives off TV dinners & is kinda a lost cause. Sad.

Yes my liver enzymes have been elevated my GI says its the celiac, I'm sure it is but know I am sensitive to all these pollutants so they can't be helping. I think I'm just set up genetically to be sensitive.

Patients who have been to the Drs Hertoghe in Belgium, report that he forbids them to drink water from plastic bottles.

He and Therese also treat compliated cases, also toxic patients, but they are mostly treating patients with various hormone problems so we read more about them on thyroid and adrenal forums.

nora

The guy that spoke at the convention I went to (he has books on mercury in the environment - I just can't remember the names right now) said that that China is putting up new coal plants weekly and the "dirty" coal they are burning gets into the air. The air flows over towards California. CA has the worst mercury problem in the air because of this.

Then it rains and washes the mercury into the soil (which is better than in the air). Then the wildfires start......the mercury is then released back into the air with the smoke.

This air then travels east and rain brings it back down to the soil and on and on. So, CA has the worst and the east coast has the least. The middle of the country is in the middle.

He says we have to do something about China burning this kind of coal. He also agrees that there are issues with vaccines, genetic predisposition, and other sources....but that the amounts in the air is increasingly getting worse - in a bad way!

Sherry, I am thinking of you and how your issues seem to worsen when you go there....could it be the pollution/mercury that is burdening your system?

Did you guys ever read about that little girl who had 9 shots in one dr. visit and went autistic? I can't remember her name either, but her father was a nuerologist and he proved, in her case, that the vaccines caused some sort of brain injury. So, he won in court and has set a precidence about vaccines. The thing is...most of us don't have nuerologist in our families that have access to state of the art testing - probably free or reduced.

I need to post more of this stuff. Gotta get my notes out though so I can post the names of everyone...

Yeah...this is all very true. Last summer when I was seeing the Dr. who did my LED treatments he was talking about how much environmental mercury we are dealing with right here in the Bay Area. We also get alot that is coming down from the old gold mines that are in the area. I think he said that there are 11 mines that are distributing mercury all through the bay area.

He said if we were looking at a map of the world and which areas have the biggest problems with environmental mercury.....there would be a huge red spot right over the Bay Area. Also, in recent years the cases of Autism in the Bay Area (Northern California) have increased rapidly....as well as cases of Lyme Disease.

I think this might be why I have no problems finding these types of doctors in my area....LLMD's, DAN practitioners, voodoo ladies....we've got them all here. Lots of business for them in California!

I do think the environmental mercury is playing a big role.

Also, with all of the big fires we had.....they also re-release plenty of mercury back into the air, water, land, etc.

But I still love California.

Very Interesting!

I was born in Santa Cruz CA raised in San Diego, have had several vaccines and fish used to be a big part of my diet. I am more careful now try to consume only small cold water fish occasionally. I miss CA, but we are planning on giving CO a shot before moving back.

Have you guys read that book,

The Autoimmune Epidemic

Bodies gone haywire in a world out of balance

by Donna Jackson Nakazawa

Very interesting, her theory is that all these autoimmune issues that so many are coming up with are caused by our toxic environment. I recommend reading it.

Could someone send me the link to Carla's Blog? Please & Than You!

*Covsooze Congrats on the little one!*

Hopefully no one will throw tomatoes at me...but I found both Endocrinologists in Tampa to be completely USELESS and many others have had similar experiences with them.

For your thyroid see if you can find a Holistic M.D. or an D.O. Osteopath, they will do a much better job. Here in Tampa we have one of the best Holistic M.D.s in the country. I go to her when I need to. She is really willing to work with me, respect me, listen to me and work out a plan together. This is what you want.

The only way to get rid of those thyroid antibodies is to take enough thyroid hormone to fully suppress your thyroid. Once your thyroid becomes inactive, then the attack stops. My Mom didnt get treated in time for her Hashi's and not only was most of her thyroid eaten away, it lead to cancer.

So dont ignore it any longer. Find a good thyroid literate doctor and save the co-pay IMO and not waste on an Endo. Hey everyone, that is must my opinion on Endos.

Get her she's one of them holistic types!

No I agree, I've always kinda known I was gonna be run in circles with traditional medicine. That so much of what I am dealing with can be treated best by a healthy lifestyle and environment. But as always $$$ is the issue. I think my new insurance has some alternative options so will look into that. If not I need to see an LLMD I know of one in my area that does holistic medicine as well... My husband has a DO Dr.will look into finding one for me.

Hope your Mom recovered well. My Mom had Breast Cancer at a young age she recovered after lots of treatment and surgeries. Saw the obgyn yesterday she gave me info for genetic cancer screening.

will be researching thyroid and the endocrine system...I have some info you posted in the MRI thread to follow up on as well.

thanks!

My suggestion would be to get retested for Lyme......this time use IgeneX and if you have a good LLMD in your area I would recommend making an appt. The LLMD can properly evaluate you for Lyme and can also order these tests for you.

Also with regards to the elevated methylmalonic acid.....this can be indicative of a functional B12 deficiency....meaning that there may be defective absorption and/or defective transport of B12.

I think urine tests are usually more accurate for this though.

Anyways, I thought I would mention that if you have a problem with B12 transport that is affecting your methylation cycle....it can impair detoxification significantly. I also had elevated methylmalonic show up in a urine test....and based on the results my doctor has ordered more testing to look specifically at my methylation cycle.

I was on M-B12 shots for a period of time last year and did not have noticeable improvement. However, some people experience amazing benefits from the shots.

One of my primary issues is chemical sensitivities.....and I know you are dealing with this as well.

The thyroid advice has been good. There definately seems to be a problem with conversion of T4 to T3....and definately some autoimmune issues going on. I also have thyroid disease...but Graves rather than Hashimoto's.

Hmm interesting!

Any idea what would impair B12 transport or absorption?

I found an LLMD in my area so thats on my to do list

thanks guys this gives me some direction!

Oh one more thing, Shay my GI did not specifically say thyroid antibodies, (at that time he had not looked over my thyroid labs.) he just said there are so many antibodies in my blood it's making my system go haywire.

Are Antibodies just formed in an overactive immune system in response to anything my body interprets as an attack?

Anything from thyroid, to gluten, to casein, to allergies to chemicals??

anyone know???

No they never did and now I'm realizing that I probably do have Hasimoto's

I posted results here also:

Open Original Shared Link

& no had not started any regular supplements at time of testing

...will start B12, D, & calcium daily

You know I have not been going to Drs for 14 years for fun, I'm not happy with how much has been overlooked! That last set of Lab you guys suggested glad I had them run!

thanks!

Lis so sorry about your friend. That is terrible! Sometimes it seems those who need it most are the ones who are unable to get help.

wishy washy is a good way to describe the process

Than You so much!

Shay you recommended most of those tests in another thread, so I made a list and had them run & now have another little piece to the puzzle! I have never been treated for anything thyroid, had been told a couple times it was a little off but it was left at that. Not considered a cause of any of my symptoms. Only since going gluten-free have I had the energy or ability to learn more about all this. And I realize now I'm going to have t o stay on top of all this because the Drs aren't always going to. So thank you for your help I really appreciate it!

I have Nature Made B Complex had held off until testing & Drs ok'ed it, but will request B12 injections, I have a friend who said they really helped her too.

My GI said that my antibodies are very high and they are making everything go haywire right now, how does one get antibodies out of their system??? Stop eating wheat??? I hope.

Since none of other Dr's have looked into thyroid (or adrenal for that matter) I should probably try to see an Endocrinologist if I want to get to the bottom of this.

Mtndog I don't mind if you post here on this thread

Jestgar I know about the averages I'm slowly learning all this guess it's best to look at all test as a whole and how they relate to each other and me. The ANA's are always High they diagnosed me with SLE Lupus a few years back. Now with so much that has been over looked I'm starting to wonder if I should look into other causes of high ANA.

Very determined to get to the bottom of all this! I went without medical treatment for years so now is catch up time. But the Celiac dx was huge! Could be the root of everything.

I should probably ad they make you wait 18 months after your approval for medicare, you get financial help in the mean time but there is no medical coverage for 18 moths.

(that makes alot of sense right? )

I was also surprised they approved me fist try, my Mom told me not to get my hopes up she (working in hospitals) had heard of so many denied time and time again. She said I would probably have to apply several times. But I was approved right away, I did have a huge medical file of documentation, several disabling conditions, and had worked/paid taxes/ gone to school non stop since I was legally allowed. So I am guess that is why.

One woman I spoke to at SS said "be sure you list EVERYTHING that disables you, all conditions should be listed and how they have changed your life"

Also it's like 50/50 calling there half the people I talk to are so nice intelligent and helpful with info, the other half well I will put it nicely, they are not. Ask to talk to a specialist, that helps.

Good Luck!

Hey Castor!

I'm so sorry you are having such rough luck! That is terrible about your home, and that your family are less than supportive. Half of mine are, the other half think I'm lazy and weak. blah!

First if you have at least a couple dx from the past fibro/depression/neuro apply again for SSI. List everything that debilitates you and the impact it has had on your life. This thread may have some helpful info Open Original Shared Link

It is common to be denied a couple times before being approved. Although if approved they make you wait 18 months before medicare kicks in. But it may give you some more income.

LLMD usually will not take insurance anyways.

It's a messed up situation! no way around it. I was in a similar one though not quite as bad but I was homeless for a while. I was denied health care at the arthritis foundation because I was not dying of lupus but was also denied medical treatment at the local clinic because they did not know how to treat lupus, "it was too serious"

I worked my butt off paying for my own college edu and working 2 jobs, however lost my insurance due to a pre-existing condition. It all went downhill from there.

You may look into Dr's doing research sometimes they will monitor you in exchange for using your medical info for research, although with lyme that may be difficult to find

Maybe consider moving to an area with better medical care/drs??? Or lower cost of living??

That helped me, although I am now buried in debt. But moving did help tremendously in my day to day existence.

I hope someone with Lyme exp will have some helpful info for you!

Just know you are not alone, there are others going though all this. And we can be there for support!

Take care of yourself the best you are able, if you are gluten intolerant and broke cheap processed food will make you sicker.

Will be thinking of you! Let's see if I can come up with any HELPFUL info

will be in touch

hang in there!!!!

hey thanks!

will check it out!

I'm actually having a really hard time getting enough food in me each day because I am really not hungry!

I'm a little worried I might sabotage my metabolism by not eating enough calories...hopefully my appetite will pick up a little over time because right now it's really bleh.

I have the same problem when I eat something I shouldn't (still trying to figure out what is safe for me and what is not) I have to force food down the next few days. Still know I am not getting enough, just have a repulsed feeling towards food.

However if I eat corn or rice it's like it's crack (well from what I have heard about crack) and I just want to eat more and more and more meanwhile I get dizzier and dizzier.

I did test positive allergic to corn and rice, so will be seeing a dietitian to help me though this.

When I get safe food in me for a day or 2 I feel great and can't eat enough.

also I have read that eating gluten produces something similar to opiates in our bodies that could explain why we would want to continue eating it despite it making us feel sick.

I posted this info on the MRI thread on related disorders because some of my symptoms are neuro.

Posting here in case anyone else has any input.

Thanks!!!!

OK So I finally got my most recent Labs back, can anyone help me understand them?

....I listed everything I have...I know it's alot just curious if anything jumps out at anyone.

My GI is telling me this will all normalize on the Gluten Free diet, but since I have several autoimmune disorders I want to make sure he is not missing anything.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

In order of Most Recent to Oldest:

Hi

I live in Austin and am newly diagnosed, my Gastro Dr is Dr Stassen. I have only seen him twice

(well 3 times counting the colonoscopy but i was thankfully out for that one )

but he has been very good. He seems compassionate and kind (not always easy to find in a Dr) and works with a large group of Gastroenterologists I figure many minds available are better than only one when it comes to getting to the root of a tricky problem.

also he is very experienced and from Ireland, Im finding many with celiac are of Irish heritage

here is a link ....

Open Original Shared Link

good luck!

I like Dr Stassen as a person and he seems to be a good doc.

But I now know he does not specialize in Celiac so Lubin may be a better choice. Stassen is capible of Dx Celiac, if you do seem him...just not his specialty.

Key West has a lot of restaurants with "real chefs" who can accomodate you, so that would be my vote.

Yes!

My Husband and I got Married in Key West May 08, it was so wonderful!

Although I had not yet been dx with Celiac (that was a week after the honeymoon, fun!)

...So that was also my last most wonderful memory of travel without having to worry about gluten.

(mmm handmade pasta with grilled seafood and hollandaise sauce, deep fried calamari, & cuban subs! ok I will stop now sorry. gluten-free options seemed very doable)

Planning for group dinners I did find most restaurants have great chefs who will listen to special requests, and used pure good quality REAL ingredients. Lots of seafood, steak, tropical fruits, Cuban food...pork, rice, beans, plantains, more fruit. Lots of Salads

We drove home for our honeymoon, spent a day on Sanibel on the way. Did not eat there but saw mostly sandwich shops and delis, there was a nice restaurant area we did not make it there the ads showed Harbor House type dining.

2 very different atmospheres:

Key West was very upbeat and a little touristy. But lots of fun stuff to do and see there

(and the nearby keys all have their own personality)

Tropical Bahia Honda was beautiful! Snorkle if you can at Looe Key...downtown Key West was a little smelly come Monday morning ( weekends are basically a big 3 day party )

Sanibel felt very relaxed and peaceful, natural, we found so many beautiful shells there and nature walks...yes lots of birds, sea turtle nests, long sandy beaches.

.....Would have made it to Destin but we got a little lost and had to head straight for the 10 to New Orleans.

May was a great time of year for some reason in between season so nothing was packed/booked. Was not too terribly hot, but if camping prepare for noseeums at dusk.

We used Open Original Shared Link

although you usually get a much better deal if you can stay a week or a month than a few days.

Good Luck!

Have a blast!