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

confusedks Enthusiast
Kassandra,

We really don't know. I am going to talk to the LLMD about this. The thing is that it's totally possible I do have Celiac and just haven't healed yet. Also, I am going to be interested in seeing if he wants to have an endoscopy/colonoscopy done because my stool test results were indicitave of major malabsorption and inflammation.

So, it could be the babesia causing it, but it also could be some sort of intestinal issue. Nobody really knows yet.

Everyone,

I think we are going to go today to the walk-in clinic and get my throat issue checked out. It is still really bothering me. I really don't want to go though. But, I see the LLMD tomorrow and I don't want him to get mad that I didn't have it checked out. :lol:;)


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
aprilh Apprentice

I guess she could be having some malabsorption issues, but she has been gluten free, dairy free (except very occasionally) for over a year now. No real intestinal issues except some stinky gas sometimes.

Her enterolab results showed gluten antibodies but that we went gluten free after that.

Wonder what your llmd will say about the relationship.

Hope your throat feels better. I only had strep one time and it felt like a truck hit me. I hurt all over my body and i could hardly swallow water.

AndreaB Contributor

Kassandra,

Hope all goes well at the clinic today.

April,

I think a lot of things can be caused by lyme, but it's hard to know without talking to an llmd.

confusedks Enthusiast
Kassandra,

Hope all goes well at the clinic today.

April,

I think a lot of things can be caused by lyme, but it's hard to know without talking to an llmd.

Thanks, Andrea.

April, Even talking to an LLMD about it...they're not always sure what is causing what. The only issue I have with the whole Enterolab/self-diagnosing thing is that Dr's cannot rule things out. My LLMD refused to let me go back on gluten like the GI dr wanted, but at the same time, how will we ever know if I have Celiac or not? That is my only hesitancy with things like Enterolab, if you continue to have health problems, like me or your daughter.

tabasco32 Apprentice
Yeah, I'm in the same place, different foods, lol. I've been eating chocolate--regularl ole chocolate, and I've been having sooooo much more congestion, and the extra sugar in general is really flaring up the ole candida.

Don't feel guilty. Same here. They have this new chocolate candy bar at whole foods that's organic. It is ssssooo good. Melts in your mouth. I went 2 days without ice cream again. Then I needed a little fix.

But I don't think 6 dark chocolate dipped vanilla ice cream bars which of course are organic that I get at Von's is a little fix. Darn Candida flaring up at me too. :angry:

The toxic symptoms went down tremendously after the coffee enymas. I wonder if doing the coffee enymas and eliminating a lot of toxins had to do with getting my period? Interesting what Juliem had to say about your organs getting to work again. Hmmm. Yeah but certainly less toxic and less depressed. Who can be in this beautiful weather. :)

Carla you look ABSOLUTY FABULOUS. I am a wee bit jeolous. :P

liza

Rachel--24 Collaborator

Hi everyone. :)

I've been keeping pretty busy lately but I'm still reading along when I can.

Well I had that one full month where I was really "living it up in the food world"....as Andrea put it. :P

All of that "fun with foods" seemed to come to a screeching halt after I got on the Alinia....trying to get rid of Cobra. :rolleyes:

Anyways, I've been really focusing all my attention on histamines because I think thats my main issue with regards to the reactions/inflammation. I feel pretty certain about it and I plan on talking to all the Dr.'s about it.

I first realized that I could eat more foods at Xmas...when I ate a normal dinner and then continued to have leftovers for about 3 days after that. I had gained 10 lbs. pretty quickly and held onto it all the way up to my parasite treatment. Since then I havent tolerated the same foods I was eating for that whole month (except the beef and peas :rolleyes: ) and I have lost about 5 lbs. :angry:

Even though I've put alot of attention on the histamines recently it took me a couple weeks to realize that everything fell apart when I stopped taking Ketotifen. :o

Ketotifen is the antihistimine I was taking before meals to reduce gut inflammation. My Dr. wanted me on it for 30 days prior to starting Alinia. Its shown to be very effective in helping to heal the gut....but it takes several weeks to really start having noticeable improvement.

For that reason I did not believe that the ketotifen was contributing much to the fact that I could suddenly tolerate more foods....it was too soon. I had only been on the Keto about 2 days before Xmas.

What I've been thinking recently is that I have a histamine intolerance. Its like my body is unable to get rid of it efficiently and it accumulates...sometimes to very intolerable levels. Other times I feel really good.

Ever since I finished the Keto I've tried to continue eating the stuff I was eating but my body is NOT liking it. My gut is upset...rumbling when I eat, I've noticed more fluid retention, weight loss, headaches, swelling, stiff neck, blurred vision, feeling cold, brainfog, etc. Also, my hands have been numb every morning and they werent numb AT ALL while I was on the Ketotifen.

Besides the swelling (big head syndrome) I find it really hard to deal with the drop in body temp. I end up getting really cold...its almost unbearable...like when you're in the snow and its so cold that you actually HURT!

It seems pretty obvious to me that all of these symptoms are related and seem to have everything to do with what I'm eating, drinking, etc. The other thing is that my chemical sensitivities seem to flare up when all this is going on. If all of these symptoms are minimal...so are my reactions to chemicals. As soon as these symptoms hit...the sensitivities escalate. My sensitivities have always been worse right after meals...and then improving after an hour or two.

I really think that my body cant break down certain food chemicals...especially the histamines and more than likely salicylates as well. I think this is why I feel pretty normal...like any other "healthy" person...BUT...I am constantly having all these reactions.

One of the most known things about how mercury affects us is its ability to inhibit any enzyme in the body. The enzyme needed for dealing with histamine is located in the small intestine and I would bet that mine isnt functioning right now.

Histamine intolerance occurs in people who have an impaired ability to degrade histamine because of reduced activity or a complete lack of the enzyme diamine oxidase. This enzyme, which is located in the jejunal mucosa, plays a clinical role in the normal metabolism of histamine.

This enzyme requires copper....which is easily blocked by mercury.

One way that mercury, like other heavy metals, is toxic is that it inhibits enzyme function by blocking needed cofactors (cofactors like iron, copper, zinc, etc).

Theres alot of little puzzle pieces that I've been putting together and it makes sense to me. I'll have to post the rest later because my lunch break is over now. Be back later. :)

AndreaB Contributor

More interesting things to think about Rachel. :)


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Oh..before I leave....just wanted to say that more Ketotifen is on its way! :D

If I can get back to eating more foods and holding onto my weight I'll be very ceratin that its an accumulation of histamine thats wreaking havoc on my body. The symptoms match up and I cant think of any other reason that the Ketotifen would be so helpful after having only taken it a couple days.

The symptoms of histamine intolerance include all of the stuff I experience...skin sensations, swelling....all the "allergic" type symtpoms. One of the symptoms is a drop in blood pressure.

I've had low blood pressure at times...its never been high or even close to being high...always more on the low side.

The symptoms of low blood pressure include..

Dizziness or lightheadedness

Fainting (syncope)

Lack of concentration

Blurred vision

Nausea

Cold, clammy, pale skin

Rapid, shallow breathing

Fatigue

Depression

Thirst

The ones I highlighted are the ones I frequently experience during reactions. I think the "coldness" I get is due to a drop in blood pressure when the histamines start building up. I do get really pale and clammy as well. Depression will only become a problem if I dont back off of the bad foods....if I continue to eat the wrong foods for more than a few days in a row. If it gets bad my mouth gets really dry and I'll be unusually thirsty.

Green12 Enthusiast
They have this new chocolate candy bar at whole foods that's organic. It is ssssooo good. Melts in your mouth. I went 2 days without ice cream again. Then I needed a little fix.

Hi Lisa, dare I ask what this chocolate bar is?? Is it Whole Foods brand?? Curiosity has gotten the best of me :lol:

When I was doing colonics/enemas I always felt much better after, like it eliminated a lot of the toxicity that my body just couldn't handle naturally, so it's not a surprise you experience this too.

I meant to comment on what you said the other day, about your thoughts on dairy coating the stomach. I always had thought there was something to that, and then when looking into med/supplement directions I came across some info that supported that. Several meds say don't eat dairy products with them because the dairy does coat the stomach and effects absorption, making the med inefficient.

Hi everyone. :)

I've been keeping pretty busy lately but I'm still reading along when I can.

Hi Rachel, good to see you.

I remember you bringing this research up about the diamine oxidase enzyme and the copper back in the day when we were discussing histamine.

CarlaB Enthusiast

Rachel, I've always had relatively low blood pressure. It has gotten a lot better with Lyme treatment.

What does a lyme flare feel like? I am wondering if my daughters leg pain could be this? Does it come on with viruses? For instance, recently her leg pain and virus all happened at the same time.

Yes, it could be a lyme symptom. It's very typical to have a Lyme flare after/during a virus or another type illness.

Dr. J, the pediatrician, says kids are ready to get off meds when they are two months symptom-free AND have had a cold or the flu with no flaring of symptoms.

This is why I was so excited that I got sick and did not flare!!!

The toxic symptoms went down tremendously after the coffee enymas. I wonder if doing the coffee enymas and eliminating a lot of toxins had to do with getting my period? Interesting what Juliem had to say about your organs getting to work again. Hmmm. Yeah but certainly less toxic and less depressed.

YAY! for progress!!

Carla you look ABSOLUTY FABULOUS. I am a wee bit jeolous. :P

liza

Thank you ..... can't say you should be jealous though, what was peeking out from behind that phone looked pretty cute. :D <--- my new smile.
confusedks Enthusiast

I went to the clinic and they were great! I will go there from now on if I have any issues that need to be handled. The Dr was very nice and she asked if I have any "life/chronic conditions" and I told her Lyme Disease. And she said, "oh you mean had." I didn't say anything back to that. Then my mom said something (I wanted to kill her because she likes to give any Dr my whole medical history even when it's totally irrelevant ;)) about me getting bit by a tick 10 years ago, and we just found out that I have Lyme.

The Dr said, that sucks, because you could have prevented it with a Z-pack. I said, "Trust me, I know!" in a nice way. It is a bummer that we weren't able to do anything about it back then, but oh well! She then asked me where I go to school and I told her online school and she asked if I have neuro symptoms and I told her yes.

My point is that she was very nice about it. She didn't dismiss that I got bit here in CA. She said a couple things that I know aren't true, but for the most part she knew what she was talking about. Also, she knew about babesia, and was very shocked that I had it. I think when I said I had to drop out of school, she got it. ;)

My throat-- they took a culture, actually 3! The screening test came back negative, but she said it's not full proof, so she did another one. I totally gagged when she did it...yucky! I have such traumatizing memories :lol: of throat cultures when I was little, I was dreading that. ;) She said we will get results on Wednesday. Until then, no antibiotics.

Carla, I usually have low BP too, but today it was high for some reason.

CarlaB Enthusiast

Kassandra, you are still taking your Lyme abx right? I wouldn't stop those based on the recommendation of a doctor from a walk-in clinic. Call your LLMD if she suggested that. :) Oops I mean, :D

confusedks Enthusiast
Kassandra, you are still taking your Lyme abx right? I wouldn't stop those based on the recommendation of a doctor from a walk-in clinic. Call your LLMD if she suggested that. :) Oops I mean, :D

Yes. I talked to the LLMD yesterday and they told me to stay on my Lyme abx...so I am. I think you misunderstood my post. She was saying that I could have prevented Lyme 10 years ago if I had taken a Z-pack right after the bite. She never said anything about stopping the abx I'm on now.

My LLMD said I could take Keflex or Ceftin for strep along with the ones I'm on now. I see him tomorrow, so if I'm still feeling terrible, I'm sure he'll say something about what to do. :)....oops :D I'm brace free, so I could use the :D smiley too!

CarlaB Enthusiast

The comment I was referring to was when you said until Wednesday, no abx. :)

confusedks Enthusiast
The comment I was referring to was when you said until Wednesday, no abx. :)

Oh. Yea, she meant no abx for strep until we get the culture results back. ;)

aprilh Apprentice

Do any of your LLMD's do phone consults? There are really none around here that I have found, but I thought maybe if I could fax over all my test results maybe I could do a phone consult.

Carla,

I think you mentioned a Dr J - pediatrician LLMD? Did I read that right?

confusedks Enthusiast
Do any of your LLMD's do phone consults? There are really none around here that I have found, but I thought maybe if I could fax over all my test results maybe I could do a phone consult.

I don't think they will treat you without seeing you first. Mine, he has a phone consult once a month, but every other month you have to see him. If you do IV though, you see him every month. Does that make sense?

ShadowSwallow Newbie

April,

I emailed Dr. Amy and the person who answered my email (although she couldn't give me any recommendations for an ART practitioner in my area) suggested setting up a phone appointment. I'm not sure how much they could do over the phone, though....

Birdy

CarlaB Enthusiast
Do any of your LLMD's do phone consults? There are really none around here that I have found, but I thought maybe if I could fax over all my test results maybe I could do a phone consult.

Carla,

I think you mentioned a Dr J - pediatrician LLMD? Did I read that right?

There is a Dr. J pediatrician ....I do not have his contact information though. He's the BEST!

Mine does phone consults, but only for existing patients. They have to see you before they'll do them. It's an ethics issue, so I don't think you'll find one who will interpret results for you unless you go in.

aprilh Apprentice

I got gua sha (ms?) done today at my acupuncture appointment. This is really helping with my symptoms! I am so excited about that. She says my liver and spleed are stressed and my digestion is slow and needs "heating".

She can pinpoint my symptoms just by looking at points on my body. I guess they look off.

She also did some kind of "roller" thing on my chest and shoulders. Last week she did cupping. It is really so very cool.

confusedks Enthusiast

Does anyone know if the lyme chat is down? I can't seem to get in?!

Green12 Enthusiast
I got gua sha (ms?) done today at my acupuncture appointment. This is really helping with my symptoms! I am so excited about that. She says my liver and spleed are stressed and my digestion is slow and needs "heating".

She can pinpoint my symptoms just by looking at points on my body. I guess they look off.

She also did some kind of "roller" thing on my chest and shoulders. Last week she did cupping. It is really so very cool.

April, this sounds VERY interesting!

I want to see if I can find someone around here that does these types of treatments.

Glad you felt it helped with some of your symptoms :)

I get to hear the results of my mineral analysis tomorrow :) I have a phone consult with my practitioner, I'm excited to hear what the findings are.

confusedks Enthusiast
I get to hear the results of my mineral analysis tomorrow :) I have a phone consult with my practitioner, I'm excited to hear what the findings are.

That's exciting! I'm so excited about my LLMD appt tomorrow too! :D It will be an email kinda day. :)

Green12 Enthusiast
That's exciting! I'm so excited about my LLMD appt tomorrow too! :D It will be an email kinda day. :)

:lol:

Have a great appt tomorrow!!!

I meant to say hair analysis, not mineral analysis, but I think it's basically the same thing? :huh:

confusedks Enthusiast
:lol:

Have a great appt tomorrow!!!

I meant to say hair analysis, not mineral analysis, but I think it's basically the same thing? :huh:

Lol. I have no idea about that...sounds like a Rachel question. ;) Thanks...I hope it all goes well for both of us. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.