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Omg...i Might Be On To Something


Rachel--24

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barbara123 Apprentice
Hmmm....I wonder what the EU means??

So I guess you dont know if it was tTG, EMA, Anti-gliadin IgA??

Well....hopefully you are starting to feel better with a few weeks on the diet. Its still early days.....you'll make mistakes and learn from them as you go. It happens to everyone but dont worry....it'll be second nature before you know it. ;)

Hopefully you'll keep on feeling better and better from here on out. :)

The test was IgA dont know to much about it he wants me to go to a gastro soon. But my appt. isnt until october 4th going to see if I can see someone else.


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tom Contributor

Re: Attack Geese training protocol

Oh my, I think you may have actually read those pages...went back briefly whilst it was slow at work, but you didn't wait. :lol:

*******MADE-JA-LOOK!!!!!*********

<snicker snicker>

barbara123 Apprentice
Hi Barbara,

That's pretty much what u expected isn't it?

Now u know anyway, right? It's all up from here! :)

Yes, I was so happy to hear i was not crazy :unsure: I actually had people ask me if i was sure it was not all in my head. (RUDE MUCH?)

I am so happy to hear that it is something that I can take control of.

Mtndog Collaborator
Rachel- Honestly- i am both horrified and amzed by you and what you have been through.

OMG- that's what I get for not proofing with LYME brain:

What I meant was: I am horrified by what you have been through and amazed by you.

But you knew that cuz we lymies have ESPn :P:lol::D

tom Contributor

Re: Donna pix!

Love your cute photos and the slightly scared look on your face. :P

Echo that!

I know, trouble, residents not able to keep up with the new lingo. :lol: (I think there is really just ONE culprit to blame for this, eh Tom? ;)) oh and possibly our clever Jin and Donna, with her new and excellent words.

Gaaaaaaah! I was tricked into it! Was it Hans?

Oh wait, maybe earlier. :huh:

<scanniing memory banks>

<bank1 . . . . . . . . . . . . . . . complete>

<bank2 . . . . . . . . . . . . . . .

Oh ya!

What? One little "multi-dimensional spectrum of situationally-dependent blahblah" doubles my culpritude??? :lol:

Booooooooooo!!

Bev - spirochete - - -LOVE that word. so much fun to say!!!!!

Meant to weigh in here. Hehe it's even fun saying it wrong as I have for however long.

Following that nattering nabob of negativity, I pronounced it like former V.P. Spiro Agnew. And "ette" like croquette. (Not croquet)

Spee-ro-ket sounds like 1/4 sized rotini!! :P

Or a ballet maneuver.

<I coulda sworn there was a 'modicum' in there somewhere>

Rachel--24 Collaborator

Post taken from LymeNET...

From Dr. Klinghardt seminar...

Relationship Between Chronic Illness and Microoranisms

When a microorganism is not recognized by the immune system, or not completely recognized, the guest will survive in the host.

I believe that all of us are home to many species of pathogenic microorganisms that include large parasites such as tape-, hook-, and roundworm, fungi such as aspergillus and Candida, smaller mostly single-cell organisms such as giardia, amoebas, cryptosporidium, even smaller cell wall deficient bugs (which often were created by taking antibiotics too often), evil creatures such as mycoplasms and Chlamydia, and of course bacteria such as salmonella, Borrelia, several species of strep and staph, and finally nanobacteria which are found in the arterial plague, and then, but but not least: the viruses.

The most important viruses clinically are the 8 herpes viruses and the different strains of influenza. In addition there are the odd ones: Simian virus 40 (SV40) was introduced into our bodies inadvertently with the polio vaccine. The prions causing mad cow disease (BSE) are no longer a European problem. A study on deceased Alzheimer patients in the US showed that 20% had prions on their brain; it is clear from this list that we need to focus on prevention, and that we nbeed to find treatments that are rapid, non-invasive and effective. There is no other diagnostic method that can rival ART in speed, non-invasiveness and accuracy.

Common connections (microorganisms listed in order of how often they are found):

ALS: Mycoplasma, Borrelia, HSV-1 and 2, CMV, HHV-6, retroviruses

Alzheimer

Fiddle-Faddle Community Regular
Well, even though I've been feeling really good today, I tried to do an upper body workout with very light weights, but my shoulder hurt too much so had to cut it short. :(

How do you guys keep UP??? (pant pant)

Did you ever have an MRI? Because everything you describe sounds exactly like my shoulder, and I have a torn supraspinatus tendon, which was only diagnosed after an MRI.

Things like upper body workouts are TOTALLY out for me for at least the next year, until this heals (I'm not anxious to go through surgery again--had it on the other shoulder, and if the orthopedist says that it doesn't need surgery, I'm pretty darn sure I don't need to go there!).

Physical therapy can work wonders (especially if they do massage), but they need as much info as possible, and often you can only tell by MRI. They also vary widely in protocol from office to office, which amazes me. You would think that there would be one protocol for a torn tendon, but no, some emphasize strengthening, others stretching.

What is necessary in any case is a physical therapist who reads YOUR body well. My current physical therapist was brilliant at getting my left shoulder back (it was mangled when I got hit by a car while riding my bicycle), but nearly wrecked my right shoulder (which was torn from overuse because I couldn't use my left arm).

What is working on my right shoulder is VERY gentle exercise VERY close to the body (no stretching or extending), and making darn sure that I never hike the shoulder. I would have sworn that I couldn't hike it--but I sure was. I think it's a natural response to the pain, but it causes so much MORE pain, it's ridiculous. Even sitting at the computer, I sometimes notice that it is coming up. And sleeping on my side makes it much worse, too.

Have you been to PT for this?

Sorry, didn't mean to hijack the thread here. It's just that the shoulder thing really jumped out at me...


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tabasco32 Apprentice

Rachel

I asumming that she doesn't want me to do the whey protein because my immune system is shot and I probably wouldn't be able to dextox right now. That is my only guess which I guess would make since.

Why take something if it's not going to work. Also my constipation has gotten real bad. My stool doesn't even reach my rectum anymore. Does this every happen to you or am I just freaking out! This is really starting to bother me. And because of this I am scared to eat sometimes. I hope the pro's can somewhat help and the enyma's. :(

CarlaB Enthusiast
OMG- that's what I get for not proofing with LYME brain:

But you knew that cuz we lymies have ESPn :P:lol::D

Ummm, I never noticed the problem and understood exactly what you were saying ... is that good or bad? :blink:

Sorry, didn't mean to hijack the thread here. It's just that the shoulder thing really jumped out at me...

Hijack this thread? It was hijacked a long time ago!! :lol:

tabasco32 Apprentice
Post taken from LymeNET...

Other most effective treatment option: color therapy, music therapy, Ozone, UV-light irradiation, and iv C and glutathione, heavy metal detox, APN, radical dental cleanup, removal of geopathic and electromagnetic stress, life style changes (remove stressors).

I just bought a celiac disease I mean celiac disease at Target. Just ocean waves and seagulls. Can I tell you how relaxing that is for me. I didn't think music therapy was so good. :):)

CarlaB Enthusiast
Also my constipation has gotten real bad. My stool doesn't even reach my rectum anymore.

I am wondering whether this could be because your body wants to hold onto everything because it's getting so few calories? Maybe it's trying to absorb everything back that is in the stool .... toxins and all.

tabasco32 Apprentice
Oh, Rachel, you've had a tough go of it, haven't you? Thank you for telling me about your experience & everything else. I'm sorry you've been dealing with all of this. I can see that it's worth taking some time to make sure I do this right. The nutritional support part is something I wasn't expecting, but makes sense that it will be an important part of doing this.

Carla, Andrea, Donna, thank you for your input. I really appreciate it.

I had suspicions that this wasn't going to be as easy as setting an appointment and showing up. I'm guessing I'm looking at somewhere in the neighborhood of $5,000 to $7,000 - but, I think it will be worth it.

I resemble that. A lot.

A lot.

Thanks again,

kat

I'm getting mine done right now and it's costing my dad $4,300 . This is for 10 almagams.

LIZA

tabasco32 Apprentice
I am wondering whether this could be because your body wants to hold onto everything because it's getting so few calories? Maybe it's trying to absorb everything back that is in the stool .... toxins and all.

Carla,,

That thought has crossed my mind too. but I just don't know. I know one of the symptoms of anorexia is constipation. hum. But I eat more now than before and it just seems worse.

Lesa

CarlaB Enthusiast

Lisa, it can be getting worse because you've been starving for so long. I'd continue trying to get more and more calories in. If you are getting enough calories that your bowels start moving again, then you'll be able to detox. It seems that more calories is critical for you right now.

Can you drink high calorie drinks (don't know what those would be)? Have you considered something like a feeding tube to supplement what you're eating until you are able to eat more?

Rachel--24 Collaborator

Detox....its most important role in recovery:

Posts "borrowed" from LymeNet. :)

In chronically ill people, the body doesn't detox well on its own. If it did, it is my opinion that we would not be sick. Most of us are loaded with toxins and heavy metals and I think that is where the infections go in our bodies. If we get the metals and toxins out, the infections are much more easily resolved.

Do we have to detox? No. Do I personally believe it greatly increases your chances of a full and lasting recovery? Absolutely!

I think ones genetic ability to detox, number of biotoxin exposures (mold, lyme etc.) and length of illness have a lot to do with why some of us need an aggressive detox regime.

Lab tests that my ILADS LLMD ran, inidcated that we were killing a lot of bugs but I wasn't getting rid of the debri and I felt VERY ill. We are also reasonably sure that I have difficulty getting rid of the biotoxins created by lyme.

Apparently about 25% of the general population has difficulty getting rid of biotoxins. I would guess that percentage is much higher in lyme patients because like Scott, I believe that part of the reason some of us are sick is because we can't get rid of the toxins.

The symptoms of lyme apparently are due to the toxins and debri that is created by the bugs. The longer we are sick, the more toxins accumulate in those of us who can't get rid of them. Then, add bug killing modalities which create more toxins and you can see why some of us get really sick on abx or herbs/supplements that kill bugs.

My understanding is that those of us who can't get rid of the toxins will never get well unless we use some means of binding and removing the biotoxins because the toxins will continue to circulate in our systems giving us the symptoms of lyme.

It makes sense that those who continue to use abx and can't get rid of the toxins will get sicker and sicker and may become very sensitive to abx or other bug killing medicines unless they do something to clear out the toxins that their body is unable to clear.

Some people who have been sick a long time and can't get rid of the toxins are probably the sickest because they have a large buildup of toxins in their system already and then adding abx or herbs that kill bugs adds a continuous supply of more toxins when the system is already overflowing with toxins.

I'm not a doctor but this is my understanding from reading various materials and talking to my doctors.

I fully support the theory that toxins are what lead us to having chronic infections - especially the metals. I have more and more been focussed on detoxification than simply killing bugs and I don't believe you can successfully do that later without heavily working on the former. Detox foot baths, foot pads, sauna - lots of other options....

One thing I certainly learned for absolutely certain, through my own treatment and by being in touch with many others that are trying to get well.

If you are killing any type of microrganisms - any of the Lyme participants, any viruses, any fungi, any mold, any parasites --- which you must be doing to get well --- at the same time that you are treating any of these you are releasing heavy metals that were holding many of these critters and living with them.

So to be successful it is necessary to have the necessary metal remedies on board to help mobilizing them more completely and then with the help of metal agents to move them out of the body completely to avoid redistribution and resettling elsewhere in the body.

The same holds true the other way around: If you are working on mobilizing heavy metals with DMPS, DMSA, Cilantro or any of the ones you choose, you want to pay attention that you at the same time causing die-offs of viruses, Lyme organisms, parasites, fungi, mold, etc. etc. and you need to be sure to have organ support detox support with chlorella, parsley, burbur, etc. Increase your anti-virals, etc.

It is very clear that if you do one thing, metals, you have to pay attention to deal with the microbes. If you are after the microbes with killing agents, you have to watch out for the metals that are being released into the body at the same time.

Don't be naive and think for one minute that you are not heavy metal toxic. We all are. That's one of the reasons we got so ill in the first place - not simply a tick infection.

All the other players cause us similar problems.

Multi-herxheimers don't feel good. One way to avoid that is being aware and prepared for all the players in chronic disease.

There are some that have different beliefs. There are some that believe Lyme can be a player all on its own. I tend to agree with these posters...chronic illness involves a breakdown of the system...theres usually a whole "team" of players involved.

My opinions are based on what is seen in ART....which I believe to be highly accurate. Theres never a single micro-organism involved....there is never a chronic illness w/out the involvement of heavy metals. Thats what shows up in every person who's chronically ill.

I think theres alot of truths in these posts.

Rachel--24 Collaborator

Sorry for the scary posts Bev. :ph34r:

tom Contributor
A lifetime project for many of us. :)

As I'm sure it will be for me. But I might only have a worthy brain 'til mid-to-late July, if this follows '05.

Had no inkling the oh so drastic recovery could be temporary back then.

Thought the crap was over.

This time I know better.

///////Lymification Failure!!///////////

(U know the drill) no no wait - the Socrates bit came out readable!!

No, but just because science does that doesn't make it an absolute, as in there are absolute truths about the nature of reality that arise through scientific experimentation.

Butbutbut . . . . . . <annie get my gun>

I never said absolute anything!! :lol:

The science is in the experiments, not the result. (I think I mentioned that)

<swigs Redbridge yum> maybe I haven't mentioned beer tho. Funny story about me having Annheuser-Busch to thank for re-trying soy-free. But that's for another time & post.

<we now return to your regularly scheduled rant>

Every scientific discovery regarding the nature of reality is in fact just another new model, which helps explain some acknowledged inconsistencies found in the previous model. (phew!)

The examples of the impact of science were evidentiary, to illustrate that the knowledge base *does* increase. Solely due to experimentation. Astrology etc does not get to run experiments.

That's where science stands alone.

There was once a much-balleyhooed so-called scientist, you may have heard of him, . . . . . . . Socrates!

But he didn't test theories thru experimentation. He said what 'felt right' or whatever.

So the four Elements, which make up everything, are Earth,Wind&Fire . . . no that's not it. Earth, water, fire and air.

He said heavier objects fall faster. And no one checked until Galileo!!!!!!!!

<swig>

I suppose, now that I'm forced to think of absolutes <shudder! science=process, not result><swig> maybe there's an absolute in a thrown ball? In a gravitational field (oh and a vacuum btw) its trajectory is a perfect parabola.

The reason the math works is because nature came 1st. If nature were totally different the math would be too.

Hehe can someone point towards the philosophy of math forum?

But I swear the purpose of the experiments is to provide clues, not absolute truths.

The article Andrea posted about the Rockefellers showed how the commercialization of health care has resulted in a system that treats symptoms and profits from continued illness.

This is what I mean by bias in science.

Ahhhh the bastardized Health Care Industry?

Well that's a tongue depressor of a different color!!! :lol:

<re-holsters pistol>

Clark Bent as Stupor-Man Contributor

quick question... for those of you taking probiotics (or when you were taking them)... when during the day did you take them and with or without food, how far away from food if not with food?

I've been taking them with food (my second meal) for a while now but have seen some recommendations to take them a half hour before a meal (say, the first meal)... don't know if it matters much if it's with food or not... maybe it would if taking them with food reduces the chances of the good bacteria in the probiotic populating the gut due to the simultaneous presence of food but who knows, I'm just guessing..

I'm also considering bumping up my probiotics to 2x a day while I'm on ABX... I did this initially when I started the ABX at 2x a day but since I went down to ABX just once a day, I've only been taking my probiotic once a day...

tabasco32 Apprentice

Carla

Yeah I have thought of a feeding tube. How would I go about that. That kind of scares me though.

tom Contributor
Boo hoo,

rue-ing the Sue,

that is not a TWO.

:lol::lol:

Dateline:Rachelville

Headline:

SUSIE SACRIFICES SECOND SYLLABLE FOR SYMPATHY-INDUCING STANZA!!!

:lol: :lol: :lol: :lol: :lol:

and Rin IS the rachelville Gazette reporter.

Heyyyyyyy I tagged Jin a columnist!! :angry::P

Plenty of room for both?

tom Contributor
quick question... for those of you taking probiotics (or when you were taking them)... when during the day did you take them and with or without food, how far away from food if not with food?

I've been taking them with food (my second meal) for a while now but have seen some recommendations to take them a half hour before a meal (say, the first meal)... don't know if it matters much if it's with food or not... maybe it would if taking them with food reduces the chances of the good bacteria in the probiotic populating the gut due to the simultaneous presence of food but who knows, I'm just guessing..

Hi Charlie,

I've wondered same tho I haven't been taking them for a little while.

The directions on mine, enzymatic pearls, say "with or without food" !!!

Does it *really* not matter??

Part of it for the pearls may be the coating however. I'm sure you've heard of it. Stomach acids don't get through and kill a ton of 'em, so they get to where I want 'em.

Too many pages back I asked what kind of game u pgm'd. FPS? Hehehe <bang! Bang!>

AndreaB Contributor

Rachel,

Thanks for posting that Klinghardt post. That was interesting.......not that I understood all of it.

I did copy it over though. :)

Rachel--24 Collaborator
Rachel

I asumming that she doesn't want me to do the whey protein because my immune system is shot and I probably wouldn't be able to dextox right now. That is my only guess which I guess would make since.

Why take something if it's not going to work.

I think you should listen to your Dr. but I dont think she wouldnt want you take it because your immune system is shot. Whey protein boosts the immune system. It enhances the immune system. It also produces what is necessary for your body to be able to detox.

If you are low in glutathione...you cant detox. Whey protein *makes* glutathione so that your body *can* detox.

Its not a chelator....which you shouldnt take if you cant detox. The whey protein is something to enable your body to start detoxing on its own.

Aside from the tissue repair qualities found in other proteins, whey protein is an immune system enhancer - it boosts the body's ability to fight infection and in some studies has been shown to even inhibit the growth of cancer cells. Intense training lowers immune system response, whey boosts immune response - it's hand and glove for us as weight trainees.

Whey assists in building up the body's own antioxidants by raising the levels of glutathione, an essential water-soluble antioxidant that protects the cells and neutralizes toxins. It's a first line immune system defense; it inhibits the growth of iron-dependent bacteria, scavenges free iron, can block the growth of pathogenic bacteria and yeast, can stimulate the beneficial intestinal micro flora and has antibacterial properties.

Also my constipation has gotten real bad. My stool doesn't even reach my rectum anymore. Does this every happen to you or am I just freaking out! This is really starting to bother me. And because of this I am scared to eat sometimes. I hope the pro's can somewhat help and the enyma's. :(

Yeah...I'm very constipated too. The warm water enemas work for me...I do them every day. I dont let myself get too constipated...it'll make me sick....thats why I stay on top of it w/ the enemas.

I know the OxyPowder works...I havent seen anyone say it *doesnt* work. Its suppossed to be highly effective. I'll let you know what happens...I'm gonna take 2 before bed tonight.

I'm sure it would work for you if you could tolerate it. I'm not taking the capsule. I went to their site...theres a ton of info. Every ingredient is discussed (theres only 3 ingredients) in detail. The capsule is Kosher vegetable.....it could contain carrageenan...one of 4 ingredients used for the capsule.

Carrageenan is NOT something my body tolerates. It says on the site there is no problem taking the powder out of the capsule and taking with water....thats what I do.

Oxypowder cleans the colon....removes impacted fecal matter from the colon. It clears toxic waste and discourages candida growth.

I hope I can take it because it has many benefits. My Dr. had said it is very well tolerated in most of her patients....even the most sensitive.

I get blockages....I think it may be largely caused by candida. I do get impacted stool. The gastro Dr. said it was really bad earlier last year when I had some GI testing.

Anyways check out the site....I'll let you know how it works for me. It's expensive but if it works it could be worth it. Constipation is something that really needs to be addressed...we cant eliminate toxins if we're constipated.

Open Original Shared Link

Rachel--24 Collaborator
Lisa, it can be getting worse because you've been starving for so long. I'd continue trying to get more and more calories in. If you are getting enough calories that your bowels start moving again, then you'll be able to detox. It seems that more calories is critical for you right now.

I agree that more calories are important. I dont think it will necessarily improve the constipation though.

Noone can accuse me of not enough calories :ph34r: ....I eat alot but constipation is always an issue. Even moreso when I'm killing yeast or doing other detox treatments.

The *only* time constipation wasnt a problem was while I was eating ice cream those 8 months. :huh:

Sorry for the TMI but my stools were huge...and daily....totally regular (except for maybe the torpedo-like size :blink: )

I'm wondering if it was really lactose intolerance?? WTH?? :unsure:

Anyways since kicking it to the curb constipation is back with a vengeance. :(

I was eating massive amounts of food back when I went to the GI and still.....major problems with the C .....it was obvious on his CT scan. :ph34r:

rinne Apprentice
Well, I am definitely NOT skinny, so you have some company in the non-emaciated club. :P

Susan, sign me up too. :lol: I'm glad to have breasts back but I could do without the hips that go with them. :lol:

.....She says my immune system is completely shot and we need to get my intestines working and back on track. Without them working properly there is no way of getting better.

.....

I'm glad she understands this, :) didn't you say that she had had mercury poisoning?

Yes, i have been on the gluten-free diet for about 20 days now, I was so sick, vomiting all the time for last 6 months. Been in the hospital (they thought I had cancer) I went to the dr. Thurs and asked him to run tests for it, he said he didnt think it was celiac but he would run the tests if i wanted. Called me today, said he was real impressed with me for figuring it out.

.....

Barbara, how wonderful that you have a doctor who appreciates your intelligence. :) Now that you know, although it may take time, you'll start to heal. :)

Yes, I was so happy to hear i was not crazy, I actually had people ask me if i was sure it was not all in my head. (RUDE MUCH?)

I am so happy to hear that it is something that I can take control of.

Yes, lots and lots of stories of friends who are idiots. :lol: I had one suggest it might be a 'food trip'. Yes, having one's gastric tract go up in flames and melting (I lost 40 pounds in a few months) was just a food trip. :rolleyes:

OMG- that's what I get for not proofing with LYME brain:

What I meant was: I am horrified by what you have been through and amazed by you.

But you knew that cuz we lymies have ESPn

Yup. :lol::lol:

.....

Sorry, didn't mean to hijack the thread here. It's just that the shoulder thing really jumped out at me...

This thread invites hijacking, how do you think we got to be 1200+ pages? :lol:

I just bought a celiac disease I mean celiac disease at Target. Just ocean waves and seagulls. Can I tell you how relaxing that is for me. I didn't think music therapy was so good. :):)

I'm thinking very relaxing. :)

Rachel, interesting posts on detox, I agree.

....

But I swear the purpose of the experiments is to provide clues, not absolute truths.

Ahhhh the bastardized Health Care Industry?

Well that's a tongue depressor of a different color!!! :lol:

<re-holsters pistol>

Clues are good. :lol:

Dawn is off I take it, good, I can sleep in. :lol:

quick question... for those of you taking probiotics (or when you were taking them)... when during the day did you take them and with or without food, how far away from food if not with food?

....

I take mine in the morning, two at once, 20 minutes before I eat.

I can't see any harm and do see some benefit in increasing your dosage while on ABX but I am no doctor. :)

...

Heyyyyyyy I tagged Jin a columnist!! :angry:

Plenty of room for both?

I am thinking Jin is definitely our columnist and that that was just a slip. :)

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      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
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