Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

LoriG Contributor

For those of you who already responded to my questions about health:

I emailed my natropath telling him I am not any better and basically I need him to narrow down what he thinks it is. He uses biophysics/energetic testing and treats with homepathic type drops. He seems to have nailed it on the head what is wrong, but the drops aren't working. Ugh! Here is his response. What do you think? If it is mercury, I read that chelation is really hard on the body and I am at a very low point and don't know if I could handle that. What else can I try besides his "drops"?

Or this virus? Ugh!! Please help.

Hi Lori,

I can appreciate your frustration.

Looking at your file, I do think there is a probability of Heavy metals, and in particular Mercury. That is another issue that takes time to eliminate and result in improved symptoms. Your option there would be to cross-check with lab tests (I think Dr. Lindstrom could do that), or, assume it and take things to help the body eliminate it. I've used many products, including various chlorella products, but I've had the best results with the NES ES15 Infoceutical.

I also think there is a probability of chronic infection. The ET7 is suggestive of virus, not EBV but similar to that. I've tried to address that with the remedy. ET13 is associated with yeast and/or amoeba and/or spirochete, and I've noticed that that has been orange 2 of the last 3 scans. Lymes is of course very tough to test medically. My opinion would be, though, that if there are heavy metals, that is what would lead to chronic infection, so I would try to test that and/or address that first.

Hope this makes sense.

Thanks Lori,


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast

Lori, it just doesn't sound like he has it narrowed down very well or that what he's doing is working. Can he (or the other doctor) sign for an IGeneX Western Blot? If so, I would do one. I honestly don't think this guy knows much about Lyme Disease since he misspelled it.

Can they sign for a heavy metal provoked urine test? I would also do one of those.

I would also test for viruses (I think there's one called something like HH6 that is often an issue).

Or I would move on to some more specific energetic testing like the ART that so many here use. I agree with his opinion that it's more than one thing .... it always seems to be.

CarlaB Enthusiast

Babysteps, I'm taking a D3 supplement until I can get some natural sunshine. I don't have any trouble with supps though, and take many of them. Obviously there is something in the supplements that you are allergic to.

confusedks Enthusiast
Lori, it just doesn't sound like he has it narrowed down very well or that what he's doing is working. Can he (or the other doctor) sign for an IGeneX Western Blot? If so, I would do one. I honestly don't think this guy knows much about Lyme Disease since he misspelled it.

Can they sign for a heavy metal provoked urine test? I would also do one of those.

I would also test for viruses (I think there's one called something like HH6 that is often an issue).

Or I would move on to some more specific energetic testing like the ART that so many here use. I agree with his opinion that it's more than one thing .... it always seems to be.

I agree with everything Carla said. The virus she is talking about is the HHV-6 virus. I have it along with EBV. My LLMD is of the mindset that they are sticking around because the Lyme. Once we kill the Lyme, they will diminish.

The problem with not using lab work or medical tests is that sometimes the Eastern Dr's can't really figure out what's going on. I went to many Naturopaths but NONE of them could figure out what was going on. One told me I had Candida, which is true, I did. But that wasn't the only problem I had, actually it was the least of my worries.

I think you need some blood work done such as a Virus panel, and Western Blot. Then you can see what needs to be treated, etc. I would definitely keep this NP you are working with in the loop, because later down the line, he may be very helpful.

This is my own experience, so you may have a different one. But I did find it was VERY necessary for me to have blood work done. :)

tabasco32 Apprentice

Hey everyone,

Hey Carla, you take zeolite? I met these nice people at whole foods yesterday and they were talking about zeolite. Is it something safe to take? I heard it was good for toxins and metals.

lisa

CarlaB Enthusiast
Hey everyone,

Hey Carla, you take zeolite? I met these nice people at whole foods yesterday and they were talking about zeolite. Is it something safe to take? I heard it was good for toxins and metals.

lisa

Yes. :)

I get mine from Nutramedix. Nutramedix has two varieties, you use Zeolite first then Zeolite HP. They are somehow energetically enhanced to removed heavy metals .... but different heavy metals. So you use the plain one first, to lighten that load, then use the HP for the other metals.

I take two every third night before bed. I also use my green laser for metal detox the same night I take the Zeolite .... it just seemed like the right time to use my laser. ;)

LoriG Contributor
I agree with everything Carla said. The virus she is talking about is the HHV-6 virus. I have it along with EBV. My LLMD is of the mindset that they are sticking around because the Lyme. Once we kill the Lyme, they will diminish.

The problem with not using lab work or medical tests is that sometimes the Eastern Dr's can't really figure out what's going on. I went to many Naturopaths but NONE of them could figure out what was going on. One told me I had Candida, which is true, I did. But that wasn't the only problem I had, actually it was the least of my worries.

I think you need some blood work done such as a Virus panel, and Western Blot. Then you can see what needs to be treated, etc. I would definitely keep this NP you are working with in the loop, because later down the line, he may be very helpful.

This is my own experience, so you may have a different one. But I did find it was VERY necessary for me to have blood work done. :)

Thank you both for your help. The 2 blood tests you mention, would that be covered by insurance? I'm sure my doc would write the prescription but I'm not sure where to get it done. And if I have this virus, he said it is called FLAVIVIRUS, then how do I get rid of that? I also have very few of the lyme disease symptoms. If I have mercury, what do I do about that? I've already spent a fortune and with this ND, I feel like I'm going around in circles and not getting better.

I am so overwhelmed!! Now I have to start treating candida and mercury on top of celiac's and adrenals and hypothyroid and on and on it goes. Where do I start??


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast
Thank you both for your help. The 2 blood tests you mention, would that be covered by insurance? I'm sure my doc would write the prescription but I'm not sure where to get it done. And if I have this virus, he said it is called FLAVIVIRUS, then how do I get rid of that? I also have very few of the lyme disease symptoms. If I have mercury, what do I do about that? I've already spent a fortune and with this ND, I feel like I'm going around in circles and not getting better.

The Western Blot needs to be done through Open Original Shared Link. They will not bill your insurance, but you can sumbit a claim form to see if insurance will cover it. I don't know if most insurance companies do or not.

The Virus panel I had done through a specific lab that my Dr thinks is the best for viral tests, called MDL. My TERRIBLE insurance company paid for most of the test. I would find out before though, because it was a $1,300 test! :o Make sure it gets covered before you do it.

But even if you have positive tests for these things, you will need a Dr who knows what they're doing in order for you to get well.

I don't know much of anything about heavy metals, as I have no experience with them.

Rachel--24 Collaborator

Lori,

The best way to really narrow things down and get some answers is to get the tests done. I've had alot of alternative testing to give us a good idea of what I'm dealing with...and then I've also had all the traditional tests to confirm.

Some tests arent straightforward...Lyme for example can be very difficult to determine. Mercury is also tricky but there are ways to get answers even if the tests arent clear. Knowledgeable Dr.'s who have alot of experience with these conditions and a good understanding of testing procedures can usually figure it out.

I agree that mercury does lead to chronic infection....candida, parasites, virus, bacteria, etc. Mercury invites them in by weakening your immune system. I dont know of anyone who is mercury toxic w/out having chronic infection....they go hand-in-hand.

Its important to know everything you're dealing with though. If for example if you did have active Lyme...but only focused on mercury....you would not recover. It would also be extremely difficult to detox mercury with an infection like Lyme on board.

I would suggest getting the western blots and also getting the testing for heavy metals....to start with. My insurance covered 50% for those tests.

I still use energetic testing throughout my treatment and I am also getting urine tests every couple months to look at the metals as I go through chelation.

Yes, chelation can be hard on your body. If your body isnt ready for it you will not do well with it. My Dr.'s had told me it would be necessary for me....that I would not likely recover without it....but they did not rush into it either. They worked on other things for a full year first ...and when I started to feel a little better they tested me for the metals and started the chelation. They started me on a very small dose and worked up to what seems to be working well for me. I've had 10 treatments over 4 months and have not suffered any setbacks or bad reactions. So far its gone very smoothly for me.

CarlaB Enthusiast

Lori, I think Rachel is probably most similar to you .... Lyme is a more minor player for her, but infections are there .... mercury is more major .... she has also used the energetic testing .... I guess I'm just saying, her advice is probably good for you. :D

LoriG Contributor
Lori, I think Rachel is probably most similar to you .... Lyme is a more minor player for her, but infections are there .... mercury is more major .... she has also used the energetic testing .... I guess I'm just saying, her advice is probably good for you. :D

Thank you Carla and Rachel.

My dilemma is I don't know where to go to get help. I live in Wisconsin. Right now I could just take the "drops" that my natropath is offering, which is sort of like chelation but on a homepathic level. I think he said that would take 6 months. Do I even bother looking to test for lyme since I have such few of the symptoms? I am also very broke and now I'm starting IV's next week. I am so overwhelmed! I do trust my natropaths diagnosis - really! The problem is that his drops aren't helping and I don't know if I should just give it longer with him.

I know I'm probably dealing with these things: Celiac's, Hashimoto's, Adrenal Fatigue, Mercury Toxcity, Candida, Chronic Virus called Flavivirus. I am not eating gluten, dairy, or any grains right now. I am taking digestive enzymes, custom probiotics, 4500mg vitamin c, Nordic Naturals fish oil, armour thyroid, desiccated adrenal.

Where do I go from here especially with limited funds and lack of a doctor? Take his mercury drops? Start treating candida?

These are my current symptoms: overwhelming fatigue, depression, irritability, constipation (a tad better). Thank you all for your advice!

CarlaB Enthusiast

Lori, given your symptoms and your limited financial resources, I would probably look for someone to do the provoked urine test for heavy metals. I would do what I could to get rid of the heavy metal burden.

If the homeopathic stuff isn't working after the time you've given it, I'd start looking for something else. It's not a matter of not trusting your doctor, it's a matter of getting some other health care to compliment what you're already doing.

Once you lift the heavy metal burden, then you can more easily clear the candida. The candida can be there to protect you from the metals. You won't be able to get rid of it as long as the metals are there.

Also, the adrenal fatigue, which I have as well, can be from being chronically ill for so long. I take herbs for adrenal support, and now that I've taken away the metal and bacterial burdens, my adrenals are substantially better than they were.

Some people need help getting rid of viruses (Kassandra is taking something for them), but others are able to clear them once they get rid of the other burdens. Maybe the doctor who treats your metals can determine whether you need something to fight the virus.

I don't know how to find a doctor educated in mercury .... you might start by asking a dentist if there's one near you on this list .... www.mercuryfreedentists.com. I would think a mercury free dentist would be familiar with the docs in his area treating mercury.

Maybe as you lift the metal burden, more will show up in your energetic testing with your current doctor, then you can pursue those avenues. But, with the limited resources, I'd go with what the energetic testing has shown, which is metals .... when the metals are gone, the candida will be relatively easy to deal with.

You also might add some chlorella .... it binds mercury and helps you excrete it. Zeolite is good for that, too.

LoriG Contributor
Lori, given your symptoms and your limited financial resources, I would probably look for someone to do the provoked urine test for heavy metals. I would do what I could to get rid of the heavy metal burden.

If the homeopathic stuff isn't working after the time you've given it, I'd start looking for something else. It's not a matter of not trusting your doctor, it's a matter of getting some other health care to compliment what you're already doing.

Once you lift the heavy metal burden, then you can more easily clear the candida. The candida can be there to protect you from the metals. You won't be able to get rid of it as long as the metals are there.

Also, the adrenal fatigue, which I have as well, can be from being chronically ill for so long. I take herbs for adrenal support, and now that I've taken away the metal and bacterial burdens, my adrenals are substantially better than they were.

Some people need help getting rid of viruses (Kassandra is taking something for them), but others are able to clear them once they get rid of the other burdens. Maybe the doctor who treats your metals can determine whether you need something to fight the virus.

I don't know how to find a doctor educated in mercury .... you might start by asking a dentist if there's one near you on this list .... www.mercuryfreedentists.com. I would think a mercury free dentist would be familiar with the docs in his area treating mercury.

Maybe as you lift the metal burden, more will show up in your energetic testing with your current doctor, then you can pursue those avenues. But, with the limited resources, I'd go with what the energetic testing has shown, which is metals .... when the metals are gone, the candida will be relatively easy to deal with.

You also might add some chlorella .... it binds mercury and helps you excrete it. Zeolite is good for that, too.

Thanks Carla for your help. I did call my nutritionist and she highly recommends me being tested for mercury before treating it. She recommended a blood test, though. I am assuming my regular doctor could just run a test covered by insurance. Would that be accurate enough? I trust my natropath's diagnosis but it would be nice to have it confirmed.

Thank you for clearing that up about the mercury first, then candida. I am so overwhelmed!

babysteps Contributor

Kassandra and Carla, thanks so much!

The calcium & vitD alone I tried first time last night & seem to be tolerating fine. At least that suggests I can take some supplements :D

I think I'll stick with this one for now and start trial and error next week for the rest of the vitamin & mineral world :)

AndreaB Contributor

Lori,

Rachel would know more about this but I don't think the blood draw for mercury is accurate unless it's a very recent exposure.

CarlaB Enthusiast
Thanks Carla for your help. I did call my nutritionist and she highly recommends me being tested for mercury before treating it. She recommended a blood test, though. I am assuming my regular doctor could just run a test covered by insurance. Would that be accurate enough? I trust my natropath's diagnosis but it would be nice to have it confirmed.

Thank you for clearing that up about the mercury first, then candida. I am so overwhelmed!

It needs to be a urine test .... you need to take a chelating agent prior to the test. Metals get stored in tissue, and this is the only way to see if you have a problem with them.

aprilh Apprentice

Lorig,

The blood test won't be an accurate way of testing. The body does not allow these metals to circulate very long because they are deadly if left in circulation and if they were to accumalate in the blood.

The body stores them in our tissues. A provoked urine challenge would be the way to go. Here is a website for reference. www.genovadiagnostics.com.

A hair analysis is helpful, too, but like Rachel said, the mercury does not always show but skewed minerals indicate a mercury burden.

You can also go by your doctor's energetic testing and go from there. I am just not sure how effective these homeopathic drops will be. Mercury is hard to get out of the body and cells. I think there is a time and place for homeopathy and it is a great tool to put with many other methods, but just not sure how effective it will be alone in removing mercury.

It could be a good way to get started on the mercury and then down the road you could do a little bit heavier chelation.

I think the mineral iv's sound very good. I know they can be expensive, but you will need them (minerals) in some form while detoxing. When you chelate metals you also chelate minerals. Because the body needs minerals you have got to replenish with the good ones rather than leave an "open space" to let the bad ones in. if that makes sense!! :)

Just remember to go slow with everything you do. It might be helpful to sit down with this doctor and discuss the many different chelating options. It could be that the homeopathy might be a good choice. I just haven't heard much about it.

As you lift the metal burden the candida will start to clear. Hopefully he has something in mind if the virus starts to shift and become more active during the detoxing. That can happen.

Adrenal support would be nice to have along the way. Another good question for the doc.

It might be helpful to write all your questions down and sit down with him prior to treatment to be sure he is covering all the bases so you feel comfortable with what he's doing.

Green12 Enthusiast

Just reading along, not much to add.

babysteps, a lot of us have really reacted to, or still react to many supplements. A multi-vitamin can be problematic for some like the others said because there are so many different things in them and it's possible to be allergic/intolerant to any vitamin. Sometimes it's best to break everything up and try one thing at a time.

I take a liquid Vit D supplement and take cod liver oil for a source of EFA and Vit D.

Lori G, I second and third what everyone else has suggested.

Last night Larry King had another Autism panel on his show. I just caught a little of it and then recorded the later showing. I hope to watch it sometime soon, it looked very interesting and they were talking about a lot of relative information that we have discussed here.

confusedks Enthusiast
Kassandra and Carla, thanks so much!

The calcium & vitD alone I tried first time last night & seem to be tolerating fine. At least that suggests I can take some supplements :D

I think I'll stick with this one for now and start trial and error next week for the rest of the vitamin & mineral world :)

You're welcome! :) Glad that you're not reacting to those supplements.

Everyone:

Just a little update on me! :)

I have taken a break from the Mepron because of the price of it. Well, it turns out I am feeling quite a bit better. I have more energy and I am not as blah feeling, lol. I also started Lyrica which is helping me sleep. I don't know if it's helping the body pain, but good sleep is always nice. ;)

CarlaB Enthusiast

Kassandra, on my short breaks I always felt better. It's a good gauge on the progress you're making as it shows you how you feel when you're not constantly killing off bugs. :D Then, towards the end of my time off, my symptoms would always start returning .... it generally took about 3 days for the first symptoms to start coming back.

I guess that's also what kept me motivated to detoxing so much! I know it's the toxins from the bacteria dying that was making me sick and getting off the meds would prove it.

I'm wondering how much of my feeling bad might be from the Humaworm. I started it a couple days before the Malarone and felt bad before I got on the Malarone. I'm going to stop taking if for a few days and see what happens. If it is what's bothering me, I might start back at a smaller dose, or even wait till later to do it again so I'm not adjusting to Malarone and Humaworm at the same time. If I don't feel any different, I'll just go back on it and finish the 30 days. I haven't seen any worm this time. :)

confusedks Enthusiast
Kassandra, on my short breaks I always felt better. It's a good gauge on the progress you're making as it shows you how you feel when you're not constantly killing off bugs. :D Then, towards the end of my time off, my symptoms would always start returning .... it generally took about 3 days for the first symptoms to start coming back.

I guess that's also what kept me motivated to detoxing so much! I know it's the toxins from the bacteria dying that was making me sick and getting off the meds would prove it.

I'm wondering how much of my feeling bad might be from the Humaworm. I started it a couple days before the Malarone and felt bad before I got on the Malarone. I'm going to stop taking if for a few days and see what happens. If it is what's bothering me, I might start back at a smaller dose, or even wait till later to do it again so I'm not adjusting to Malarone and Humaworm at the same time. If I don't feel any different, I'll just go back on it and finish the 30 days. I haven't seen any worm this time. :)

Yea, I mean, I don't feel great, but I feel decent. Instead of the 20% I've been feeling I feel maybe 40%. It's good, but conditional. Like, the thought of having to get up at 5.30 and get back into my regular routine is insane, but at least I was able to run 3 errands today. I also have an appt to go get some pampering done! :D I am glad I am having a little break from feeling bad.

I hope I don't start to herx like crazy when I come to see you! :huh:

CarlaB Enthusiast
I hope I don't start to herx like crazy when I come to see you! :huh:

Me, too. If you do, don't worry, you can sit around here as well as you can sit around there. :D

Chloe was concerned that you might be bored at home all day with no brothers and sisters there with you. That concept is so foreign to her, she can't imagine it. :lol:

confusedks Enthusiast
Chloe was concerned that you might be bored at home all day with no brothers and sisters there with you. That concept is so foreign to her, she can't imagine it. :lol:

LOL! How cute! :D I am so used to it....I'm home all the time alone. :)

I got my eyebrows waxed today, and when I stood up to get off the bed/table thing I almost passed out! :o It was scary! I guess I got up too fast? :unsure: Nonetheless my eyebrows look good! :lol::D

LoriG Contributor

So in light of my recent posts, I saw my regular dentist today and he wants to replace one of my fillings because it has worn away from the tooth. I explained I wanted a non mercury one put back in. Of course, he gave me the run around but agreed. Now I'm worried about the mercury exposure when he takes it out especially with my probable mercury toxicity. Is there anything I can do? Also, what is the best test for mercury? that urine one? blood test (if so what's it called) or hair analysis?

aprilh Apprentice

LoriG,

You can request goggles and a rubber dam. You can also take activated charcoal before and after the appointment to help absorb toxins that are released. And chlorella will help too.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SaiP replied to SaiP's topic in Coping with Celiac Disease
      2

      Dangerously underweight, Perfect gluten free and insomnia

    2. - trents replied to SaiP's topic in Coping with Celiac Disease
      2

      Dangerously underweight, Perfect gluten free and insomnia

    3. - cristiana replied to sillyyak52's topic in Coping with Celiac Disease
      1

      Family education

    4. - sillyyak52 posted a topic in Coping with Celiac Disease
      1

      Family education

    5. - SaiP posted a topic in Coping with Celiac Disease
      2

      Dangerously underweight, Perfect gluten free and insomnia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,154
    • Most Online (within 30 mins)
      7,748

    Rowan CP
    Newest Member
    Rowan CP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SaiP
      Hi Trents  Many thanks for the response. My average intake ranges from 3000 - 4000 calories per day. In regards to carbohydrates, the majority of my calories are coming from white rice. I eat around 2000+ calories of white rice per day, so definitely not low in carbohydrates. I was thinking of adding sweet potatoes to the diet. Yes, fats are low, looking into it. I've seen people complain about the same issue in 3-4 threads, but there hasn't been any solution. I was thinking of eating the same diet as stated above and each day, eat small pieces of toast to see, by how many hours my sleep improves.  What makes you think gluten widrawal would subside? Is this insomnia happening because maybe I've been a asymptomatic then symptomatic celiac all my life and the body is "shocked"? There seem to be almost no information on gluten widrawal and insomnia anywhere.    
    • trents
      Welcome to the forum, @SaiP! Have you been officially diagnosed with celiac disease or are you self-diagnosed? What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with sleep. Can you do potatoes? Also, tryptophan is reported to help with sleep. Turkey meat is a rich source of tryptophan.  Also, your diet would seem to be low in fats and oils. Apart from the avocado, there is not much in your diet to supply this vital category of nutrient.  Your theory about the connection between gluten withdrawal and insomnia seems reasonable. Especially since you have experimented with it. Gluten withdrawal should subside in a few weeks I would think.
    • cristiana
      @sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply.  I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help.  Just sit your family down and say, "Please just watch this one video with me."    There is one, here for example, on Coeliac UK, which I think is convincing - What is Coeliac Disease? https://www.coeliac.org.uk/healthcare-professionals/resources/videos-for-newly-diagnosed-patients/?&&type=r&set=true#cookie-widget I was watching a TV comedy programme we have in the UK over Christmas called Doc Martin.  If you get this programme where you live, there is a case on the final ever episode (Christmas 2022).  The seriousness of celiac disease is explained in that episode,. Perhaps watching something rather than reading would help?  But if you are after something short to read, I am not sure what country you live in but you might be able to find a coeliac charity that produces pamphlets, or perhaps your GP could let you have something?  Perhaps even better, would you be able to attend the GP surgery with your mother and get your GP to explain the seriousness of not complying with the diet? Cristiana
    • sillyyak52
      I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms, which consequently led to a positive celiac blood test and eventually a positive biopsy. Since starting the gluten free diet, I no longer have any deficiencies or unexplained fatigue. When I am glutened now, I experience bloating, severe constipation (that often affects my sleep!) and an onset of fatigue.  My family does not believe that I actually have celiac disease, and thinks that all these symptoms are a 'placebo' effect of being told the 'wrong' diagnosis. Ever since my diagnosis, they have constantly been telling me that I should seek a second opinion. I really don't see the point of getting a second opinion. I trust that the blood test and biopsy were accurate, and the improvement in my blood tests, fatigue and the symptoms I experience now when I now accidentally consume gluten are enough for me. On top of that, if I were to seek a second opinion now, I believe I would need to do a gluten challenge to get an accurate diagnosis, which I am definitely not willing to do just to please my family.  Because they don't believe in my diagnosis, they think that I take the diet 'too seriously'. They are always comparing my celiac disease to my siblings' mild peanut allergy, and it is so exhausting trying to explain it when they just look at me like I am crazy. For example, since my siblings can eat products with 'may contain peanuts' with no issues, they tell me I am ridiculous for avoiding 'may contain gluten' products when possible.  I am also very careful about cross-contact in restaurants, which they will make similar comments about. I have been told are that "I need to stop being so fussy because I live in the real world". Recently, when I did not want to buy my birthday cake from a local bakery that confirmed their gluten free items are not coeliac-safe, my family told me "Well, who cares? They said it's gluten free. What more could you want? Do you need to take them to court to prove it's gluten free so you'll eat it?" It is truly so upsetting that after a year they have made no effort to understand celiac disease, and why I am so strict or 'fussy'. I have thought about giving them information to read, but my mom never ever reads anything. Not even her own emails, and will often make me read things and summarise them for her. She is honestly the one who is most difficult and very obviously still sees my celiac disease as something that I choose to believe.  How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?
    • SaiP
      Hi guys,  I have been reading this forum for quite a while now, so I decided to create an account and post my story.  I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and  and decided to go gluten free. Age - 34, Male  Weight - 94lb - 43 kg (look like a skeleton, ribs showing etc) Height - 170cm Main symptoms - Severe weight loss + severe brain fog Allergies - (all life threatening) - eggs, nuts, peas, lentils, sweetcorn and many antibiotics. I am on a 100% strict gluten free diet (all made at home) i.e. I only eat:  cooked chicken thighs (with salt+pepper) White rice Bananas, apples, avacados  Brocolli, spinach, beetroot Tuna Water After trying this diet for a week I suddenly developed severe insomnia and can barely get 1-2 hours of sleep, however when I start eating gluten again, my sleep is perfect. I have seen other threads on this forum from people experiencing the same thing, and other people recommending e.g. B12, magnesium etc. However, I highly doubt this insomnia is caused by a lack of vitamins+minerals. I am thinking this insomnia is caused by some kind of gluten widrawal. I am now eating small amounts of gluten daily to see whether the insomnia will improve and gradually reduce the amount of gluten, so my body gets used to the sudden change and the insomnia will stop I am fairly confident this approach will work,  but unsure. The main issue is, I am dangerously underweight now, but sleep is much more important, so I am in a conflicted situation. Your thoughts? Thanks!  
×
×
  • Create New...