Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

happygirl Collaborator

x


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
A clean filter may help in both houses. It's something many people neglect to change regularly. Does cracking a window help at all? I try not to keep the house closed up too long. If the weather's nice at all, I try to open a window for a little while. In the winter the house is just closed up way too long! Sometimes I'll even open a window for a while when it's really cold out.

Carla, I read that when the house is closed up and heaters are going..the indoor pollution level rises VERY high. :o Its far worse than the city air outside.

OK...I'm REALLY going to the mailbox this time..... :lol:

Green12 Enthusiast
You really should choose a Lyme dr by talking to several HAPPY SATISFIED CUSTOMERS first. I have an "official" list of drs. He's not on it. His website sounds good, but I caution you to find several happy patients of his before spending money on it.

Just my 2 cents worth. I have 6 yrs of experience in referring people to LLMD's.

Hi Lymetoo :)

Any doctors on your list in the Colorado area by chance??

happygirl Collaborator

x

rinne Apprentice

I think you have a good point Lymetoo, I liked my doctor and he knew something of Lyme but just enough to be dangerous. :lol: The trouble is how do you find those happy patients when most people on the Lyme boards seem to be struggling to find doctors? I guess your list is the answer to that. Thanks for your help. :)

cheryl50 Newbie

Hi Rachel,

Ray changed the heater filter and closed the vent to your room. Hopefully it is safe for you now.

Good idea. Go to the mail box.

Love,

Mom

Rachel--24 Collaborator
Hi Rachel,

Ray changed the heater filter and closed the vent to your room. Hopefully it is safe for you now.

Good idea. Go to the mail box.

Love,

Mom

Thanks Mom. :)

I went to the mailbox.....there was nothing from Igenix. :(

Maybe the holidays have caused a delay. <sigh>

Gotta wait till next weekend. Then I see my Dr. on Monday the 4th.

I think you have a good point Lymetoo, I liked my doctor and he knew something of Lyme but just enough to be dangerous. :lol:

:lol::lol:

Rinne....luckily you are smarter than him. ;)

If anyone wants the list of LLMD's let me know. Lymetoo pm'd me the list.....you can also find it on the LymeNet message board. You can get recommendations for an LLMD in your area from the members of that board but nothing will be shared openly on the board. They protect the identity of the LLMD's because of all the politics surrounding Lyme. I imagine its worse now that they've passed this new law about the antibiotics.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

x

Rachel--24 Collaborator
rachel,

please share about the new law?

thanks,

Laura

I posted about it after my last Dr. appt.

I'll try to find my post with a search.....since it was much fresher in my mind at the time. :rolleyes:

Rachel--24 Collaborator

Ok...going back is not so scary when you use the search feature. :)

I asked him why so much controversy surrounding Lyme??? He said it all comes down to politics. Half of the medical community is still saying that "chronic Lyme" does not exsist....the other half (who he likes to call the more "intelligent" half :) ) are aware of the fact that Lyme Disease is a long term disease that requires more than 2-3 weeks of antibiotics. He said that unfortuately people like me are suffering and going undiagnosed and untreated for years. He said if the whole medical community were to acknowlege Lyme Disease for what it truelly is...the insurance companies would not be able to cope. If every person were diagnosed and able to recieve antibiotic treatment the numbers would be staggering and the costs for longterm treatment for all Lyme patients would exceed what the insurance companies can handle. So instead....they bury their heads in the sand and ignore Lyme Disease.

Even worse....he said that just last week they have made it law...that no Dr. shall treat a Lyme patient for more than 3 weeks with antibiotics. :o

This cannot be good for the future of those who have Lyme. :angry:

I know that this is something that has been going on for quite some time now....the controversy of Lyme Disease. I've noticed that on the Lyme boards they DO NOT post the names of their Dr.'s....to protect them...because these Dr.'s are treating Lyme Disease as a chronic illness and can suffer the scrutiny of the medical profession if they are "found out".

How scary is that?? :unsure:

So I dont know what will happen now.....with this new law. I dont know if my Dr. is only going to treat me with 3 weeks antibiotics or if he will go beyond that. He said as of right now it is not a felony to do so.....but it is VERY VERY frowned upon.

The controversy surrounding Lyme is also a large part of what the documentary "Under Our Skin" will be about. They are half-way through production but need more funding to complete the film.

happygirl Collaborator

x

Rachel--24 Collaborator
wow that is terrifying. :(

Yeah....it all comes down to the insurance companies not wanting to pay for the massive amounts of antibiotics that would be needed if Dr.'s were allowed to treat Lyme Disease as it *should* be treated.....long-term.

WildCondor talked about this in her story as well.

miamia Rookie
Thanks Mom. :)

I went to the mailbox.....there was nothing from Igenix. :(

Maybe the holidays have caused a delay. <sigh>

Gotta wait till next weekend. Then I see my Dr. on Monday the 4th.

:lol::lol:

Rinne....luckily you are smarter than him. ;)

If anyone wants the list of LLMD's let me know. Lymetoo pm'd me the list.....you can also find it on the LymeNet message board. You can get recommendations for an LLMD in your area from the members of that board but nothing will be shared openly on the board. They protect the identity of the LLMD's because of all the politics surrounding Lyme. I imagine its worse now that they've passed this new law about the antibiotics.

Rachel-

I woudl love it if you could send me the list

Miamia

happygirl Collaborator

x

miamia Rookie
M-I have it and I'll send it to you. It is not all-inclusive but it would be a great start. xo

thanks laura-

that would be great. From everything it souds like about lyme no matter what my tests show i think it would be good to contact someone whos specialty is Lyme.

I have to go in tomorrow to get all the blood work done- at 2 different labs which is a drag but at least I will hopefully get it done and be a step closer to finding something out

Miamia

miamia Rookie

Laura-

3 of them are in my area- I just googled them- all seem reputable and really different in their approaches. I'll have to do some more research.

Rachel-

the heater thing- I have been feeling the same thing since the heater has come on I definitly feel affected by it -

Green12 Enthusiast

I would like the list as well, or at least anyone who is in my state.

Thanks :)

Rachel--24 Collaborator
Rachel-

the heater thing- I have been feeling the same thing since the heater has come on I definitly feel affected by it -

Winter sucks. :angry:

I've always said I feel way worse in the winter....now I know why! I normally BLAST the heater all winter because I hate being cold. I'm realizing that the more you eliminate things that are bothersome in your diet and environment....the more obvious the things that are still there become. Its VERY obvious to me right now that the heater is affecting me. :angry:

In the past I would have blamed it on my food....but its not my food. Still eating the same 5 things.....no change there. :rolleyes:

miamia Rookie
I would like the list as well, or at least anyone who is in my state.

Thanks :)

julie-

i just sent it to you

CarlaB Enthusiast

Laura, is the doctor I emailed you on the list? Will you please email me the list? Maybe there's someone closer to me.

Rachel, I always feel better if I just wear a lot of clothes and wrap up in a blanket. I feel like I'm suffocating when it's warm inside in the winter. It's like there's no oxegen in the air when it's warm inside. I don't like it reallly cold, but 67-69 is what it's usually set on. And I'm usually freezing, but drink hot things and wear sweatshirts and Ugg slippers all the time.

happygirl Collaborator

x

Rachel--24 Collaborator
julie-

i just sent it to you

me too.....sorry...I'm a little slow. :rolleyes:

DingoGirl Enthusiast
Hi Rachel,

Ray changed the heater filter and closed the vent to your room. Hopefully it is safe for you now.

Good idea. Go to the mail box.

Love,

Mom

:lol::lol: Hi Cheryl! OMG, this just cracked me up, Rachel's mom posting about the filter. :lol::lol::lol: And the gentle nudge to go to the mailbox. thanks for the laugh! :P

happygirl Collaborator

susan----i love your new avatar, by the way :)

Rachel--24 Collaborator
And the gentle nudge to go to the mailbox. thanks for the laugh! :P

:lol::lol:

ROFL....you noticed that too huh. :ph34r:

She will be pleased....tomorrow I will bring to her....MAIL. :lol:

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.