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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748

    Jennifer CCC
    Newest Member
    Jennifer CCC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.