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Omg...i Might Be On To Something


Rachel--24

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confusedks Enthusiast

Ok, I am going to post a list of questions I'm going to ask Dr H tomorrow...I'm really spaced out today, so can anyone think of anything I don't have on here?

-IgG Subclasses

-Detox HLA Gene

-Something non-addictive for sleep/anxiety/depression

-Detoxigenomic Profile, done at Genova Diagnositcs

-Asthma or air hunger

-anemia results

-if unable to detox


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CarlaB Enthusiast
Carla, hope the herx lessens very soon. Sounds rough. I keep wondering if my symptoms are an almost constant herx on the andrographis.

Thanks.

How well did you muscle test for the andographis? How long have you been on them?

It's pretty palatable with the apple in it.

Sherry

Palatable? Ugh. Don't know if I could face that first thing in the morning, LOL. Actually, I have a juicer and used similar things to what you mention .... it's the pulpy stuff I'm having trouble imagining! I don't know that my blender is good enough for that! Of course, if I had C, I'd try it. :)

Ok, I am going to post a list of questions I'm going to ask Dr H tomorrow...I'm really spaced out today, so can anyone think of anything I don't have on here?

Looks good to me.

The night before last I slept ten hours .... woke up twice and went right back to sleep. Last night I was back to my five hours. :(

confusedks Enthusiast
The night before last I slept ten hours .... woke up twice and went right back to sleep. Last night I was back to my five hours. :(

That sucks! I didn't fall asleep until 2.30 AM and had to wake up at 8.00. I tried to go to bed around 11, but I had horrible chest pain and palpitations, it was really scary. So someone on lymechat was asking me all these questions, and suggested I go to the ER. Well, I hate the ER! :ph34r: So I didn't go, and I'm sure I was fine. I think it might have been a herx, but it was scary! Needless to say, I couldn't fall asleep after that whole thing.

confusedks Enthusiast

I had my appt with Dr H... it went really well! He's changing lots of meds, etc. He decided that instead of dancing around with the slow progress (like, VERY slow) we are going to start IV. He said I will need it anyway, so we might as well just get going. I will be working out all the details of getting a Port, etc.

I will type up an update soon and send it out to everyone who I have emails for.

Green12 Enthusiast

Happy Birthday to Morgan!! Sorry about Adam's watch Carla, that was quite the skilled pick pocket to take it right off his wrist :o Hope you are feeling better.

Kassandra, glad you had a good appt. look forward to hearing about it :)

Sherry, I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

Little Miss Allergy, congrats on your diagnosis. Someone else mentioned (I think) that around here we give praise for a diagnosis because then you know what you are dealing with and you can get started on the road to recovery with treatment....so it's a good thing! :D

Andrea, that's awesome about the corn pasta at the Old Spagetti Factory. We used to have one here, but I think it closed down. It's great to hear that more and more eating establishments are getting that food allergy/intolerances are a serious issue, especially gluten, and jumping on the bandwagon offering gluten-free items.

AndreaB Contributor
I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

That's right......that's an article I wanted to read but didn't have the time earlier......off to find the link......

Happy Birthday Morgan!

AndreaB Contributor

Julie,

I couldn't find it (Klinghardt), I had read Sherry's link for the HBOT though. :(

Can you post the link again if you have it handy? If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.


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ShadowSwallow Newbie

Kassandra,

Can't wait to hear about your appointment. Sorry that you need to go on the IV abx, but I'm glad you guys have a plan. :wub:

Everyone,

I'm just keeping up here. Ups and downs... emotionally down a lot. :( And I'm not on the computer as much as I used to be.

:wub: Birdy

Green12 Enthusiast

Hey Charlie, glad to see you pop in. I haven't done well with any protein type bar (nut, seed, or fruit) so I gave up on them. I'm not really familiar with any of the brands out there, I am sure there are new ones all the time too. Sorry can't be of more help.

I'm pretty bummed out right now because for some reason I decided to look into my Graves/hyperthyroid....even though its not an issue anymore. <_<

I read all kinds of stuff stating that zinc/copper imbalance causes thyroid problems. The presence of the toxic metals and the imbalances they cause can trigger hyper or hypo....and then its corrected with detoxification and mineral balancing.

Now I have to take thyroid meds for life but it probably would have completely resolved on its own once everything got back in balance. :(

This is a total bummer Rachel, stupid mainstream Drs indeed.

Constipation and detox treatment from my Chinese friends:

If you can handle raw foods this might work. They take 2 stalks of celery, about 4-5 inches of carrot, an apple, 4-5 inches of cucumber, 1/2 green pepper, and 4-5 inches of "bitter melon", all cleaned, pealed, etc., and blend it with a little water into a pulpy juice.

Drink this within 15 minutes of making it on an empty stomach first thing in the morning.

The ku gua (bitter melon) can be purchased in an Asian grocery or market, and they said using it once a week is okay. They use it every day because it and also kale have beneficial properties for controlling blood sugar.

It's pretty palatable with the apple in it.

Thanks Sherry, i might try this. I don't need it for the C, but I am curious to see what it does for detox.

I couldn't find it (Klinghardt), I had read Sherry's link for the HBOT though. :(

Can you post the link again if you have it handy? If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.

The one I emailed you earlier?

It's a huge pdf, the one I was asking about yesterday how to copy and paste. It's off of Klinghardt's website, maybe it has been posted before....

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

I'm just keeping up here. Ups and downs... emotionally down a lot. :( And I'm not on the computer as much as I used to be.

Awww Birdy, sorry you are feelong so down lately. What's going on with you?

Don't be a stranger :wub:

AndreaB Contributor
The one I emailed you earlier?

It's a huge pdf, the one I was asking about yesterday how to copy and paste. It's off of Klinghardt's website, maybe it has been posted before....

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

Oooohhhhhh, there it is! I couldn't remember where I had seen the link. :ph34r:

I'll read it later as all of us have monopolized the computer today and hubby needs some computer time.....it's only fair. :rolleyes:

mftnchn Explorer
Thanks.

How well did you muscle test for the andographis? How long have you been on them?

Tested really well for the andrographis, both my body and effectiveness against Bb and co-infections. I've been on since Feb.

Ups and downs I have had all along since gluten-free, worse since December.

Sherry

mftnchn Explorer
Sherry, I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

Yes, I'll check tomorrow on the Klinghardt site.

Sherry

mftnchn Explorer

Julie, I think I'll try this morning veggie blend for a few days because today as soon as I took it I had a BM and much more fully emptying than usual. I figure that alone should help the detox. Meanwhile I'll keep you posted if I start feeling better.

Carla, it is a little like a slush in consistency, and rather bland. Wayne says we should add a little honey and it would be good. Since he is not a veggie lover at all, I figure that's a pretty good recommendation.

Sherry

CarlaB Enthusiast
I had my appt with Dr H... it went really well! He's changing lots of meds, etc. He decided that instead of dancing around with the slow progress (like, VERY slow) we are going to start IV. He said I will need it anyway, so we might as well just get going. I will be working out all the details of getting a Port, etc.

I will type up an update soon and send it out to everyone who I have emails for.

I look forward to receiving it!

Happy Birthday to Morgan!! Sorry about Adam's watch Carla, that was quite the skilled pick pocket to take it right off his wrist :o Hope you are feeling better.

Very skilled indeed!

Well, I was feeling a little better yesterday .... my fever was down to 99.0. But this morning my regular monthly flare up hit. Yikes. I didn't even go to Mass this morning with the family (I'm hoping to be able to go to 7PM Mass).

I skipped the morning meds, used some glutathione cream, took some Cholestyramine, and need to get enough energy together to do an ecoffee. When the family gets home, I'll ask someone to clean the downstairs tub so I can take an epsom salt bath.

I can't skip evening meds because it's Lariam day. Historically, I've had a bad time when I put off the Lariam. Hopefully my detox day will help me get over this soon. Also, historically, I feel a lot better and my "new med" herx usually ends after my flare.

If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.

The link I posted was a Power Point. If you don't have Power Point, you can't view it. I don't have any way to convert it to anything else. Sorry. :(

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

My doc feels the same way. He'd rather see the money spent elsewhere where he has seen more results.

Tested really well for the andrographis, both my body and effectiveness against Bb and co-infections. I've been on since Feb.
Well, if you tested well, perhaps it's just causing a good die-off. :)

Carla, it is a little like a slush in consistency, and rather bland. Wayne says we should add a little honey and it would be good. Since he is not a veggie lover at all, I figure that's a pretty good recommendation.

Sherry

Might be good to do for him .... a little local raw honey if you can find it. :)

It's hard for me to like veggies anymore. For so long I got severe stomach pain from veggies, so I'm kind of conditioned to not like them .. I used to love veggies. I'm working on that. :)

confused Community Regular

Sherry,

Is there anything to subsitute the bitter melon for. I really dont think we have that here. I dont have any asian stores in this little hick town lol.

paula

Rachel--24 Collaborator

Kassandra,

Glad you had a good appt. yesterday...look forward to hearing about it.

Andrea....I'm so jealous about the pasta! :P

I cant wait for pasta and garlic bread! I think recently this has become #1 on my list of cravings....even replacing Big Macs! :o

One other thing that I've been craving ALOT the past few years is cinnamon rolls.....nice big ones like Cinnabon makes. Yum! :D

Anyways, a couple days ago I saw that Whole Foods started carrying a new line of vegan gluten free foods. They had some cinnamon rolls!! :o I cant ever have cinnamon because I react strongly to it...and its one of the few that showed up in my bloodtest. For some reason there was no cinnamon listed in the ingredients yet...it still tasted like cinnamon rolls?? :unsure:

Yup...I did buy them and I ate 2 of them as soon as I got home. :P

Very yummy...but my tummy was rumbling and I can tell by my symptoms that there were too many salicylates (also soy). Next time I'll only eat one at a time. ;)

I had fun at the pool party yesterday. It was up in the hills (Los Altos) where the view is amazing and its just really peaceful (plenty of deer up there though :ph34r: ). The weather was PERFECT...It was really warm, no wind, I was so happy. :D

I brought my enzymes with me and I had 2 regular hot dogs with buns (no condiments), chips and salsa, bbq'd chicken and potato salad!! :D

None of it made me feel bad but I did get a runny nose and cough after I ate. My cold is still hanging around (barely) and if I eat anything other than beef and peas I'll end up coughing for a few hours afterwards. Its pretty annoying. :angry:

Oh yeah...I got a text from Lisa warning me not to eat too much CAKE!! :lol:

That totally cracked me up....fortunately, there was no cake (or any type of baked goods) to tempt me. :P

Rachel--24 Collaborator

I had emailed Dr. Amy all the info. about my RBC element test results as well as the results of my last provoked urine test. I was supposed to fax them to her office but I totally forgot since I stayed home from work 5 days out of the past 2 weeks. I got kinda thrown off from my priorities...not that thats anything unusual....but I'm just gonna blame it all on my cold cuz it sounds better. :lol:

Anyways, I did tell about my copper numbers on both tests and I mentioned that I wanted to get back on DMPS and if I need mineral IV's I'd like to leave the copper out this time. I told her I wanted to see if the metals will start coming out after copper is brought down.

She reminded me that I still havent sent her my lab results but she said that the amount of copper in my urine is significant. So I'm assuming that its higher than what DMPS would normally be pulling out if copper levels were normal to begin with.

She does want me back on the DMPS IV's and either mineral IV's without copper or no mineral IV's at all. She said zinc is the preferred treatment for bringing the copper down so if I do any IV's they need to have zinc.

Dr. S. also wanted me on zinc and I'm on my 3rd try with oral supplements. It looks like I might be tolerating Kirkman brand....so far so good with the ones I've tried....including the zinc. :) I think I might also need to do some IV's to help boost up my minerals though. I'm gonna wait until the copper comes down a bit first and then work on getting the rest up to where they need to be.

She wants to have a phone consult with me so I need to send over all my results and then schedule the phone consult.

elisabet Contributor

Rachel,

It is always good to read your posts,they give either information or hope.

thank you.

I like to ask you give me a list of your safe foods.Do you eat yogurt?

Elisabet

Rachel--24 Collaborator
Rachel,

It is always good to read your posts,they give either information or hope.

thank you.

I like to ask you give me a list of your safe foods.Do you eat yogurt?

Elisabet

Elisabet,

I'm happy to share my experiences and I'm glad you find it helpful.....we can never have too much hope. :)

I really dont have a safe foods list.....most foods do bother me. My two safest foods are organic grass fed beef and organic frozen peas....that pretty much stays the same and its been that way for a couple years now.

If the beef is not fresh or if I overcook it....then I will react to it. It has to be very fresh and it cannot get browned from cooking.

Everything else is a gamble....depending on how overloaded my system is on any given day, depending on quantity, depending on added ingredients, etc. etc.

I do not tolerate yogurt at all so I dont even try with that one. Some foods are just completely off limits and yogurt as well as ALL fermented foods are not at all tolerated. I avoid them completely. I dont eat anything with vinegar....I dont even try to eat condiments like salad dressings, mayonaise, ketchup or mustard.

I avoid all foods high in sulfur as much as possible and if I do have something with garlic or onion I only eat a small amount. I definately avoid sulfites in processed foods as much as possible.

I avoid all food colorings....no exceptions. I try to avoid anything with preservatives and other chemicals. Only occassionally will I indulge in that stuff.....like yesterday at the pool party. They did have some cookies but I passed them up because they had pink frosting (food dyes).

I try to avoid the high salicylate foods and stick to the Feingold diet as much as possible.

For me its not a matter of finding safe foods anymore (there just arent any). Its more important for me to avoid the ones that I know for sure are very stressful for my body.

Besides the stuff I just listed I know that these are also very problematic for me:

Soy

Whole Grains (possibly because they are high in copper)

Beans

All high phenolic foods (includes chocolate and most fruits)

All nuts

All spices

All herbs

Some of those foods are high in copper and that might be one reason I do poorly with them....spices and herbs are very high in salicylates.

As far as chemicals....I avoid all of these as much as possible.

1. Synthetic colours (or food dyes) I avoid these 100%

2. Artificial flavours: they are petroleum based additives: for instance vanillin or MSG (Monosodium Glutamate) which is found in two forms: naturally in food and as an added flavour enhancer, MSG is used in many processed foods such as stock cubes, soya products, crisps and Chinese food.

3. Anti oxidants and preservatives: BHA (Butylated Hydroxyanisole) BHT (Butylated Hydroxytoluene) TBHQ (Tertiary Butylhydroquinone) which are petroleum based preservatives. I avoid these 100%

4. Salicylates: these natural chemicals found in fruits, vegetables, plants and nuts act as preservatives and insecticides. High levels of salicylates are found in almonds, apples, apricots, berries, cherries, chilli powder, cloves, coffee, cucumbers, currants, grapes and raisins, nectarines, oranges, paprika, peaches, peppers, plums, prunes, tangerines, tea, tomatoes, wine, oil of wintergreen (list from the Feingold Association of the United States). Salicylates are also found in aspirin.

5. Aspartame: an artificial sweetener found in sugar substitutes. While the Food and Drug Administration, which regulates the manufacture of food, drugs and cosmetics in America, states that aspartame is safe, several consumer associations claim that it can cause illnesses including cancer. I avoid this one 100%

6. Nitrites and nitrates: common additives used in processed meat, fish and cheese. I avoid it 100%

7. Benzoates: they are flavourings and preservatives found in margarine, dry soup, salad dressings, condiments, sauces, soft drinks and some liquid medicine. I avoid it 100%

8. Sulfating agents: they are found in corn syrup and are generally used in dried fruits and to keep food white.

The ones that are harder to avoid are salicylates. Sulfites and artificial flavorings such as MSG are also harder to avoid and are present in most processed foods.

confusedks Enthusiast

I sent out my email update. :) If anyone didn't get it, let me know. I'm more than happy to send it to you, but PM me with your email address.

Rachel--24 Collaborator

Kassandra,

Thanks for the update. :)

It sounds like you had a productive appt. and are moving forward with treatment. Hopefully it'll be what you need to start feeling better. :)

I had to laugh about the fibro.....I feel the same way. :lol:

I cant believe that doctors actually get away with that...it seems almost like a crime to me. :blink:

Its like saying "I dont have time to figure out whats wrong with you...so here ya go." :rolleyes:

About the genetic component. I'm really hoping its not an issue for me. Dr. Amy and Dr. S. say that it almost always is....but not in EVERY case. Its not too difficult for them to get around the genetic stuff once they know whats missing....but those tests are expensive!!

Amy said that if I had some genetic weakness/predisposition she would have expected some early signs/symptoms....and there werent any in my case...which is unusual.

I'm thinking that I just had too much exposure in a very short time...more than what my body could handle. So my enzymes may have become blocked or dysfunctional due to metals and nutritional imbalances. Still on the fence about the genetic stuff...for now I just know that its not working right!

If the chelation and nutritional support doesnt help get things functioning better I'm gonna have to shell out the $ for genetic testing. I'll probably talk to Amy about that when I have my phone consult.

The other thing is that noone else in my family has symptoms. I notice that in most cases other family members are having some chronic symptoms....but in my family I'm the only one with these problems.

Like you pointed out....I just all of a sudden got hit with this. Amy said thats not usually what happens...usually its a gradual thing with more and more symptoms coming up over a period of years. That why Lyme didnt seem the likely culprit for me because she said most people with chronic lyme and co-infections just dont wake up with everything happening all at once.

I'm praying that things start to improve for me soon though. The sulfur thing makes me feel really toxic and I think that avoiding those foods and supplements has made a huge difference for me as far as how much better I feel now. I'm thinking it will do the same for you...and hopefully make your treatment alot more tolerable.

The sulfur builds up to toxic levels and I know for me that it makes everything else seem alot worse.

I have a really good list of sulfur stuff to avoid....both food and supplements. I know I've posted it before but let me know if you want to see it. I'll be happy to re-post it for you.

mftnchn Explorer
Sherry,

Is there anything to subsitute the bitter melon for. I really dont think we have that here. I dont have any asian stores in this little hick town lol.

paula

Maybe just leave it out; my friend told me using it once a week in the mixture is adequate. When I talk to her next I'll ask about a substitute.

Sherry

AndreaB Contributor
The link I posted was a Power Point. If you don't have Power Point, you can't view it. I don't have any way to convert it to anything else. Sorry. :(

I think I have powerpoint viewer but I'll have to look.

Sorry about you having to miss Mass this morning.

Rachel,

I'm glad you were able to go to the pool party and have a good time. :) I'll look forward to your phone consult update when you have it.

Kassandra,

I got your email. Thank you. :) Hope everything goes smoothly with everything.

mftnchn Explorer
My doc feels the same way. He'd rather see the money spent elsewhere where he has seen more results.

Hmm, sounds like it isn't the best option. I read it helps but only temporarily. Bummer, was hoping for another option.

Sherry

confusedks Enthusiast

Rachel,

Yea, I agree with everything you said about genetics, etc. My mom and I are going to sit down tomorrow and figure out where exactly we are going to spend money (IV, home health care, genetic testing, food testing, etc.) If I do have this test done, I will definitely email you the results though, if you're interested. :)

And if you could re-post that list of sulfur foods, I would REALLY appreciate it! Dr H will fax me some stuff about it, but I'd love to get as much info as possible. When I google it...it's really hard to sort through everything! It's like when you first go gluten free, you think about how many foods you have to get rid of, and it scares you! :lol:

Also, I took a sulfur test strip today and it was lower!!!!! :o:D I don't have any idea why, but I was so excited!!!

Everyone,

So I realized today that I'm going to be having surgery this week! (Assuming everything goes as planned...) It hasn't hit me yet, but woah! I'm kinda trying to not think about it, but I've never been under general anesthesia before. I've had local, but not general...ahhh!!! :P

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      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.
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