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

miamia Rookie

Thanks again everyone for the nice messages.

Here is a quick update-

Ok so Last week i had gone on this 3 day medication for parasites- it did not go well- it could have been a die off tyoe thing or possibly just a bad reaction to the meds but I was very ill. So there is one more anti parasite thing my doc wants to try me on but first we are going to give my body a break to try to regain some balance. He does want me to start a new Probiotic its the VSL#3 - Carla-is this the one you are taking? I waited a few days but I am goiung to start it today so I am hoping I will react alright to it.

Miamia


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
dlp252 Apprentice

Good luck with the new test and probiotic Mia...I worry about you every time I hear you're starting something new. :unsure:

Well, I did a quick search for fibroids and mold and didn't see anything linked, so I'd have to agree that this may be just a contributing factor. Everything I've ever seen links them with estrogen, but I suspect that different environmental factors play a part in how our bodies process anything, including estrogen.

CarlaB Enthusiast
He does want me to start a new Probiotic its the VSL#3 - Carla-is this the one you are taking?

Yes, I bought the lemon flavored packets and mix them with plain kifir.

I also take Theralac and Ultra Flora.

If you already have a candida overgrowth, then you might want to start out SLOWLY!!! The VLS#3 has 450 billion bacteria in it!! That's about 450 times as much as other probiotics!

Laura, how are the antibiotics going? I'm still totally wiped out from mine. I was playing my flute at Mass Sunday ... I always go sit with my family for the Gospel and homily, then go back and play. Last week I stayed with the family for the rest of Mass because I just couldn't handle it. I'm totally wiped out.

happygirl Collaborator

Hi Carla,

Let's see...this weekend, not so good. As I posted earlier, got sick on Friday afternoon at work. Saturday, did so-so, but we were out all day (at a huge concert), and I think it was too much for me. Yesterday, we were at church in the afternoon, and I started getting sick....neck, arms, hands, head, then by the end of the evening, my stomach was not liking me. Came home, got sick. Went to bed, but then woke up (thanks to a text message), and then since I wasn't feeling well, I couldn't get back to bed....very long night. I ended up staying home from work today. IV treatment this afternoon. I havent gotten out of bed yet today. Hypothetically, I will. :)

Hope you are doing well---thanks for asking.

L

AndreaB Contributor
Here is a quick update-

Thanks for the update Miamia. I hope you do ok with the probiotics. I'm sure glad you get a break for a bit.

Good luck with the new test and probiotic Mia...I worry about you every time I hear you're starting something new. :unsure:

Me too.

Last week I stayed with the family for the rest of Mass because I just couldn't handle it. I'm totally wiped out.

I hope you get a break soon Carla. :(

IV treatment this afternoon. I havent gotten out of bed yet today. Hypothetically, I will. :)

Hope your IV treatment goes well. If I remember correctly there was one that didn't go well but the others have? Hope you can get a good night's rest tonight and that you were able to nap a little this morning.

happygirl Collaborator

Andrea,

First one went perfect. Second one, I reacted to during the IV. Third and more so the fourth, I've had issues with pain and discomfort. Fifth (today) is going to be perfect :).

happygirl Collaborator

Andrea,

First one went perfect. Second one, I reacted to during the IV. Third and more so the fourth, I've had issues with pain and discomfort. Fifth (today) is going to be perfect :).


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
I think I found out what M is intolerant too.

He calls it I'm tired.

I call it "I don't like it" intolerance. :lol:

Now let me tell you.....this is very serious......it's seemed to affect most of his diet. :P

Were you serious about this?? :unsure:

Ok so Last week i had gone on this 3 day medication for parasites- it did not go well- it could have been a die off tyoe thing or possibly just a bad reaction to the meds but I was very ill. So there is one more anti parasite thing my doc wants to try me on but first we are going to give my body a break to try to regain some balance. He does want me to start a new Probiotic its the VSL#3 - Carla-is this the one you are taking? I waited a few days but I am goiung to start it today so I am hoping I will react alright to it.

Miamia

Thanks for the update....hope you're feeling better now that you're giving your body a rest.

I get worried about you too when you're starting new meds or sups. :ph34r:

Laura and Carla....hang in there girls. {{{{{{{{hugs}}}}}}}}}}}}

AndreaB Contributor
Were you serious about this?? :unsure:

Not really. Just trying to give you guys a little chuckle, although it does affect most of his diet.

He just wants cereal, bread and fruit. He does like a small bit of some meats, depends on his mood. We actually went out and got some butter to try and make his veggies taste better. We had butter with our french toast this weekend as we also went back on the eggs. So far so good. I won't be feeding the children eggs unless it's in something though. I'm supposed to avoid high allergen foods with S but it's kinda challenging to avoid everything.

I think a lot of children have an "I don't like it" intolerance. :lol: :lol: :lol:

dlp252 Apprentice
I think a lot of children have an "I don't like it" intolerance. :lol: :lol: :lol:

Some grown ups too. :ph34r:

NoGluGirl Contributor

Dear Rachel,

The politics on Lyme are scary. I wondered if the co-infections needed treating first. I am glad you posted that. Does Igenix find you an LLMD, or do you have to find them yourself? I may have Babesia as well, so that would be worth testing for.

Incedentally, a new development in this is I found out my mother was bitten by a tick at least twice before I was born! Could she have given me Lyme? I think it is possible. Mothers can give an unborn child disease. Even though I went out in the woods as a teenager, I do not recall ever being bitten. This may be why. What do you think?

Dear Claire,

Fibroids and cysts both have a lot to do with excessive hormones. I think mold might play a part in people with Candida, though. Candida can cause menstrual irregularities and infertility, among other things. This is a fascinating topic. We have a history of problems with cysts in my family on both sides. My mother had a hysterectomy due to cysts when she was in her 30s, and her mother had one at 36, and many of my mother's cousins had hysterectomies for the same reason. My grandmother on the other side of the family had everything out at 26. The odds are not in my favor.

Dear Mia,

I worry about starting anything new, too. I never know how things will affect me. My system does not tolerate much. Things either do not do anything or make me sick. It makes things very difficult.

Dear Laura and Carla,

Antibiotics do things like that to me a lot. They make me really tired and sick. The only one that does not bother me too badly if at all is Amoxacillin. Many others give me the runs and nauseate me. I used to take Zithromax well, but it is not gluten free. Doesn't that figure?

Dear Andrea,

My mother has the "I don't like it" intolerance! She is a total food snob!

Sincerely,

NoGluGirl

NoGluGirl Contributor

Dear Rachel,

The politics on Lyme are scary. I wondered if the co-infections needed treating first. I am glad you posted that. Does Igenix find you an LLMD, or do you have to find them yourself? I may have Babesia as well, so that would be worth testing for.

Incedentally, a new development in this is I found out my mother was bitten by a tick at least twice before I was born! Could she have given me Lyme? I think it is possible. Mothers can give an unborn child disease. Even though I went out in the woods as a teenager, I do not recall ever being bitten. This may be why. What do you think?

Dear Claire,

Fibroids and cysts both have a lot to do with excessive hormones. I think mold might play a part in people with Candida, though. Candida can cause menstrual irregularities and infertility, among other things. This is a fascinating topic. We have a history of problems with cysts in my family on both sides. My mother had a hysterectomy due to cysts when she was in her 30s, and her mother had one at 36, and many of my mother's cousins had hysterectomies for the same reason. My grandmother on the other side of the family had everything out at 26. The odds are not in my favor.

Dear Mia,

I worry about starting anything new, too. I never know how things will affect me. My system does not tolerate much. Things either do not do anything or make me sick. It makes things very difficult.

Dear Laura and Carla,

Antibiotics do things like that to me a lot. They make me really tired and sick. The only one that does not bother me too badly if at all is Amoxacillin. Many others give me the runs and nauseate me. I used to take Zithromax well, but it is not gluten free. Doesn't that figure?

Dear Andrea,

My mother has the "I don't like it" intolerance! She is a total food snob!

Sincerely,

NoGluGirl

tabasco32 Apprentice

Hi

I am somewhat new to this forum and I have talked to rachel about a few things going on with me as well. I woke up one morning what felt like a bladder infection. I then toke macrobid didn't work then cipro didn't work either. So i gave up. Went to my gyno with bv infection and yeast probably due to the antibiotics so she prescribed metronidazole. I got so sick I thought I was going to dieee! Ever since then my stool and intestines have not been the same and this has been going on since july of last year. Well I have interstitial cystitis I believe, so I will be having this so called feeling of a bladder infection for the rest of my life with no cure. So my basic liquid diet is water. my symptoms are gas, bloating, gerd which just started a few days ago, hair loss, undigested food most times, i need to chew my food 50 times a bite, weight loss, constipation, cold hands and feet, tired at all times, hungry right after eating, bitter sweet taste in mouth. But out of all these symptoms one of them really, really worries me and I don't know if any of you have this but I will throw it out there. Whenever I smell something sweet like sugar or artificial sweeteners or perfumes that are real strong and sweet I get, o.k. ready for this, vaginal discharge. Like is this normal? Does anyone else experience this. Just wondering since the doctors don't know they just raise their eyebrows and looked shocked. I don't like going anywhere because of this, not even to the store, or beach or church. any information or comment would be appreciated. Oh and I have cut out gluten and corn for 5 months already, now cutting off eggs and dairy and most stuff.

thank you and god bless you

lisa ;)

Rachel--24 Collaborator
Went to my gyno with bv infection and yeast probably due to the antibiotics so she prescribed metronidazole.

Hi Lisa,

I meant to ask you about this before but thought maybe I was reading it wrong?? Did your Dr. prescribe mertronidazole for yeast?? :huh:

Metronidazole is an antibiotic...no antibiotic should ever be used to treat yeast....antibiotics *cause* yeast...they do not treat yeast.

An antifungal would have been appropriate for yeast...definately not an antibiotic....and especially a strong one like Metronidazole.

It sounds like this made your situation a whole lot worse....and its not surprising since you were already having problems before the metronidazole.

Having discharge when you smell stuff like perfumes or sugary type things indicates a pretty big Candida issue.

I had never had this happen..... I havent actually developed a "traditional" yeast infection through my entire illness....even though I have big time problems with Candida.

I've experienced something similar to this though. I've actually felt a yeast infection coming on suddenly...when I've smelled strong perfume, when I drank alcohol (especially red wine) and when I've eaten very yeasty foods. It was an immediate response...and it felt like I'd be getting a yeast infection for sure....but it just never happened. I would just feel burning and itching for an hour or so and then it would go away.

I dont know what your Dr. was thinking giving you the Metronidazole?? :huh: I think this is definately the reason for the discharge. Were you ever taking any probiotics while on the antibiotics??

I dont eat foods to feed yeast and I dont ever get that "sensation" anymore....I have chemical sensitivities so I always react to perfume but I dont get any kind of "yeasty" feelings coming on anymore. I still have major yeast issues but I think when I was eating a regular diet I was "over the top"....I'm somewhat better now.

I think the candida has probably really overpopulated your gut.....the antibiotics probably wiped out your good bacteria allowing the yeast to grow. This would cause all the symptoms you're having.

You should probably start trying to get the yeast under control with diet/antifungals. You could also have underlying issues which suppressed your immune system enough to let the yeast get out of hand. Most people with bad candida have it because of an underlying issue.

I would start with the candida and see how you feel.

Rachel--24 Collaborator

When I got off work today and stepped outside....OMG....I felt HEAT!!!! :o

This is very exciting....I didnt have layers of clothes on today either. :D:D

I hope it gets to be in the low 100's very soon. :P

Only 5 more days till my appt. with Dr. D.....I hope this week just BLOWS by. :)

After all this anticipation I seriously hope the appt. is productive....I hope it can put my mind to rest about some things. If thats possible. :rolleyes:

Rachel--24 Collaborator
Does Igenix find you an LLMD, or do you have to find them yourself? I may have Babesia as well, so that would be worth testing for.

Incedentally, a new development in this is I found out my mother was bitten by a tick at least twice before I was born! Could she have given me Lyme? I think it is possible.

Igenix wont find you an LLMD...they may be able to give you names of some Dr.'s in your area....but we can do that here. I have a list and I'm pretty sure Carla has a list too. If you're interested let me know...I'll pm you any names I have in your area.

Yes....your mother could have passed you Lyme if she has it. The bacteria can pass to the unborn baby in utero....lots of babies have been born with congenital Lyme Disease.

You could have also been bit. At least half of the people with Lyme dont ever recall being bit. Sometimes it goes unoticed and not everyone gets a bulls-eye rash.

This is why so many people end up with chronic Lyme....because they never knew or suspected they had it and they dont get treated in the initial stages.

CarlaB Enthusiast

Laura, sorry it's hitting you badly, too. This is relentless ... thanks for the well-wishes from everyone. I'm keeping a good mind about it, but I'm a little bored (that's an understatement!) from just laying around all day. There are many days, Laura, that I'm getting out of bed before the kids get home from school, otherwise I'd just hibernate upstairs all day! I hope the IV went well today.

NoGlu, as Rachel said, you can get it from your mother. My friend's daughter got it from my friend. Thank you for breaking up your posts, it's much easier for me to read them now! ;)

Hi, Lisa, welcome. Rachel is right, antibiotics make yeast worse.

Well, today Adam dragged me to the kitchen place ... we worked with the lady for five hourse designing our new kitchen! It's going to be great getting that done, our kitchen now is pathetic and disgusting ... impossible to get the dirt out of it! Yuck! I got to sit down all day with new scenery! :P It was the first step in a big process.

AndreaB Contributor

Welcome Lisa! :)

tabasco32 Apprentice

Thank you everyone

rachel,

I was actually taking the flagyl for bacteria vaginosis but in pill form not gel. I know I probably should have had the gel. I wasn't taking probiotics, which I never hear of till recently about 6 months ago. I have that bladder problem though that started at the same time. Can candida leak into the bladder and damage it? This yeast problem is driving me crazy because I don't know what to eat no more. I have the i.c., ibs, candida, gluten and all other stuff. What does that leave me to eat. Rachel what do you eat on your diet? It would help give me ideas as to what to eat. Right now I am surviving off of buckwheat cereal, beans, sliced turkey meat, red potatoes, sometimes pear and apples, almond butter, chicken soup homemade which consists of, brown rice pasta, butternut squash, yellow sqash, green zucchini, avacado okra, peas, and I think thats it. I have tried the yeast free gluten free seed bread made with white rice flour and stuff but it gets my guts all bubbly. I NEED HELP GIRLS. Oh I am also taking cod live oil pills and essential enzymes for breaking down food. Rachel would these thing be o.k.? And same with the discharge I never get yeast outside it just comes then goes away. I wonder if it is mercury poison from my leaky fillings or that I was an achohalic beer drinker for 7 or 8 years.

thank you

lisa

dlp252 Apprentice

Hi LIsa, welcome! I was also going to say that your symptoms sound like they could be candida related. I had many of those same symptoms myself, and they are slowly resolving themselves recently, but it's taken a while.

Rachel - I thought of you while driving home from HN today...you don't drive a mustang do you, lol? There was a mustang behind me for quite a while, then as it came up beside me I saw a girl wearing a baseball cap and thought of you immediately. :lol:

dlp252 Apprentice
Right now I am surviving off of buckwheat cereal, beans, sliced turkey meat, red potatoes, sometimes pear and apples, almond butter, chicken soup homemade which consists of, brown rice pasta, butternut squash, yellow sqash, green zucchini, avacado okra, peas, and I think thats it. I have tried the yeast free gluten free seed bread made with white rice flour and stuff but it gets my guts all bubbly. I NEED HELP GIRLS. Oh I am also taking cod live oil pills and essential enzymes for breaking down food. Rachel would these thing be o.k.? And same with the discharge I never get yeast outside it just comes then goes away. I wonder if it is mercury poison from my leaky fillings or that I was an achohalic beer drinker for 7 or 8 years.

Hi again. Yeast/fungi feed off of sugar and things that turn to sugar, and from what you've said above you've got a lot of that in your diet. I'm going an anti-candida diet now and basically I eat meat, eggs and low sugar veggies. No grains, no starchy veggies, etc. Pretty limited, but at least it's not feeding the candida--I should note that my diet is even more limited than it would be because I have several intolerances. I have some websites bookmarked, but they're at work, so I'll post them tomorrow...it will give you an idea of what is okay and what is not.

tabasco32 Apprentice

oh rachel I forgot to ask

I live in daly city right now

which dr. do you go to?

NoGluGirl Contributor

Dear Lisa,

I was going to say the same thing as Rachel. Candida is a nasty thing. I have it to. I told my doctor I had a yeast infection last November, and she told me it was BV. Then she gave me Flagyl! It made me very ill as well. To top it all off, I used to get broncchitis twice a year since birth until I was 17, so that was more antibiotic damage. Then, there were the steroids for my asthma I took for several years as a teen, plus birth control to stop the ovarian cysts. That is the trifecta from Hell when it comes to yeast. I have had almost all of those symptoms as well.

Yeast overpopulates a lot of things. Your entire body can come down with it. It is a full body fungal infection. I recall reading you said the gluten free yeast free bread irritated your stomach. Yeast tends to cause your system to be sensitive to foods high in carbohydrate. A low carbohydrate diet is what is used to treat it. My stomach is not right either. I have improved since going gluten free six months ago. However, dairy needs to be avoided from now on. My doctor says casein may be the trouble. My nausea can really be bad.

I am like Rachel, I could not believe she gave you the Flagyl for yeast! :blink: That only makes it worse. To counteract the damage, as Rachel said, taking probiotics and antifungals are a good way to start. The diet is really strict. I am still fighting a sugar addiction, but am doing better and eating less than before. I wrote an essay on Candida, so just send me your e-mail address so I can send you a copy if you like.

Dear Carla and Rachel,

I appreciate your input on the Lyme. I bet both me and my mother have it! She has high blood pressure and stuff, but she is always so tired. I don't think it is just menopause. She is also probably Celiac.

However, despite me addressing my concern, she ate three cream horns today! :o I would like a list of Lyme docs in my area. I would be surprised if there are any here. I know one thing, I would not go to IU Med again in Indy, they nearly killed me when I was there before!

To give you an idea of how smart they are up there, they missed my gallbladder being bad, told me I was crazy, then could not figure out why I was losing weight though I had been on a liquid diet for four days! :rolleyes:

Sincerely,

NoGluGirl

P.S. You are welcome Carla! I know what you mean, my brain does not want to read long paragraphs either.

Rachel--24 Collaborator
Rachel - I thought of you while driving home from HN today...you don't drive a mustang do you, lol? There was a mustang behind me for quite a while, then as it came up beside me I saw a girl wearing a baseball cap and thought of you immediately. :lol:

Nopers...I drive a Mitsubishi Eclipse. :P

Other girls wear baseball hats too.. :lol::lol:

I almost bought a mustang though....I had to decide between Eclipse and Mustang and the Eclipse won out cuz of better gas mileage (I was communting) and I liked the looks of it. I'm due for a new car again.

I still like Mustangs and Eclipses but I'm not crazy about the new body styles for either car. <_< People always wanna buy my car cuz its the old body style before they started making changes. If they still had this body style I'd buy a new one in a heartbeat.

I cant get a new car until I get better from chemical sensitivities...the stupid formaldahyde would probably kill me. :blink:

I've been looking online though...dunno why....by the time I'm better these cars will probably have changed yet again. :rolleyes:

What do you guys think??

Mustang or Eclipse??

Open Original Shared Link

Open Original Shared Link

I think I like the Eclipse better....I'm probably in the minority but I just dont like the looks of the new mustang....then again I didnt like the last body style at first and now I love it. :rolleyes:

Donna, this is my car....its silver...identical to the one in the pic.

Open Original Shared Link

If you see a girl with a cap driving this car....it definately could be me. :)

Rachel--24 Collaborator

Ohhh....this is the one I really want. I think the Eclipse looks sort of "bubbly" now but its a heck of alot more appealing as a Spyder.

What do ya think??

Open Original Shared Link

I think I really want this car.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.