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

AndreaB Contributor
AndreaB
Posted

Rachel,

Thanks for always taking the time to post about your appointments.

I for one really appreciate it and enjoy reading about them.....and/or talking to you. :)

I so excited about all this for you!

Laura,

I'll be waiting for you to post about your appointment tomorrow. Hopefully this will be one of the good doctors. :)

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
covsooze Enthusiast
covsooze
Posted

Rachel -

I'm sure you probably explained this pages and pages ago, so sorry in advance for asking - what does the bioset treatment involve? Are they testing to see what you've got problems with or trying to remove those problems?

I second Andrea's thanks for explaining about your appointments. It's so so helpful :)

What is the plan for dealing with your problems with molds? I react to them too and don't really know what to do about it. How do you store your fruit and veggies? I had some grapes yesterday that didn't look moldy plus I washed them but some of them tasted moldy. I'm feeling cr*ppy today - don't know whether it's to do with the grapes.

My dietician has worked out a plan for me for my elimination diet. roll on the new year!!

Susie x

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Susie, I don't know if you are already doing this, but when I wash grapes, I put one drop of dish soap (I use Dawn, don't know if they have that in the UK) in the water and i scrub a littel with my fingers. Then I rinse, really, really, really, really well.

That seems to make a huge difference in taste compared to just rinsing with water.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Rachel,

Thanks for always taking the time to post about your appointments.

I for one really appreciate it and enjoy reading about them.....and/or talking to you. :)

Me, too! Me, too@

I am so grateful for all the information. I have no Lyme symptoms (other than the gluten intolerance thing) that I know of, so no point in even asking for a test, but I wouldn't be surprised if I develop them down the road, as I grew up going to summer camp and having lots of bug bites, and I even had a case of cellulitis that started with a bug bite (in Massachusetts!), so I figure I'm high risk. Luckily, I was put on an IV of antibiotics right away, so maybe that caught it it early.

dlp252 Apprentice
dlp252
Posted

I already know I'm allergic to molds...highly allergic. That showed up on my initial scratch test 4 or 5 years ago, and it showed up again when we retested last year, still at high levels. That's why my original ENT alway thought I had a candida issue, well that, and the fact that he prescribed TONS of antibiotics for me.

I'll be so interested to see what the bioset thing says about molds for me, lol.

And, I just want to say to EVERYONE that I'm thankful you all post your appointment info and results. I'm hoping much of it is getting stored somewhere in my fogged brain. I may or may not have an issue with Lyme...it would explain a lot, but reading everyone's stuff is helping me in other ways regardless, so it almost doesn't matter if I have it or not. Same with the mercury stuff, which I'm sure I DO have an issue with.

Well, I woke up at 1:00 a.m. again...but this time I waited until 2:00 to start coughing...coughed for about 30 minutes, then just layed there thinking about sleep, lol. Eventually I dozed off again, but don't feel very rested right now. (Course it's 6:40 a.m. (and I've already been up for a while) on a day where I don't have to work, so what does THAT say, lol.)

I'm undecided if I want to make my morning trip out to the grocery store or to Safeway for gift card for my mom...decisions, decisions....don't think I can do both, but what I don't do today, I have to do tomorrow, ugh, lol.

This afternoon I have a chiropractic (and PT??) re-evaluation.

dlp252 Apprentice
dlp252
Posted

So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

CarlaB Enthusiast
CarlaB
Posted
So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

:lol: I hope it doesn't kill everything in your head!! ;);)

Rachel, interesting about the appt. I can tolerate a little bit of peanuts or peanut butter occassionally, but not too often. I'm allergic to mold, too. Makes it easy whenever we've bought a house, I can tell if there's mold as soon as I walk in the door ... makes my eyes itch and my nose run.

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

Celiac.com Sponsor (A8-M):


dlp252 Apprentice
dlp252
Posted
:lol: I hope it doesn't kill everything in your head!! ;);)

Ha, that was TOAST a long time ago, lol. :lol:

AndreaB Contributor
AndreaB
Posted
So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

:o

Get thee to the store! If you haven't left yet. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel -

I'm sure you probably explained this pages and pages ago, so sorry in advance for asking - what does the bioset treatment involve? Are they testing to see what you've got problems with or trying to remove those problems?

I second Andrea's thanks for explaining about your appointments. It's so so helpful :)

What is the plan for dealing with your problems with molds? I react to them too and don't really know what to do about it. How do you store your fruit and veggies? I had some grapes yesterday that didn't look moldy plus I washed them but some of them tasted moldy. I'm feeling cr*ppy today - don't know whether it's to do with the grapes.

My dietician has worked out a plan for me for my elimination diet. roll on the new year!!

Susie x

Susie.....heres a link for an explanation of Bioset.

Open Original Shared Link

I go for testing/treatments twice a week. They are trying to eliminate all my sensitivities, get my body detoxing, strengthen my immune system, improve my digestion...stuff like that. I have ALOT going on with me. I react to almost everything.....foods, chemicals, molds, etc. I'm highly toxic. :(

The Bioset lady I see is supossed to be the best in the country for getting people better from multiple chemical sensitivities.....so my Dr. sent me to her a couple months ago.

I dont have to worry about storing my fruits and veggies because I dont eat any.....except apples. I get way worse trying to eat fruits and veggies....I only eat 5 things right now....apples or applesauce is one of them.

Grapes can be problematic for lots of reasons.

1. molds

2. sulfites (most grapes are sprayed with sulfur dioxide)

3. salicylates (natural occurring chemical in certain fruits and veggies....some people are intolerant)

4. MSG (grapes can be sprayed with Auxigro...which is 30% glutamic acid or MSG)

I have problems with ALL of these....so I just dont eat grapes at all. :(

happygirl Collaborator
happygirl
Posted

x

happygirl Collaborator
happygirl
Posted

x

DingoGirl Enthusiast
DingoGirl
Posted
Grapes can be problematic for lots of reasons.

1. molds

2. sulfites (most grapes are sprayed with sulfur dioxide)

3. salicylates (natural occurring chemical in certain fruits and veggies....some people are intolerant)

4. MSG (grapes can be sprayed with Auxigro...which is 30% glutamic acid or MSG)

I have problems with ALL of these....so I just dont eat grapes at all. :(

Rachel - (forgive me, another drive-by),

You know, I think I am reacting to grapes now, too.....there is defnitely an intestinal difference the next day. :huh: Strangely, however, I don't have any reaction to wine. Rather confusing.

Hi everybody! one day I'll catch up with all this......hey, how about this, somebody (Andrea? :)) should write a Cliff's notes summary about every......20 pages or so...... :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Laura,

The results are negative by CDC and also by Igenix criteria. If the 39 band was (+)....instead of IND.....then the results would be positive.

The 41 and 58 bands arent specific for Lyme...could be any bacteria with those. I'm not sure about 30...as far as how significant it is. I've seen conflicting info. about whether band 30 is specific for Lyme or not.

I dont think the results can give you an answer. Did you say you saw an LLMD today?? I'm curious what she said. Remember that Lyme is a clinical diagnosis....there is not always a definate answer in the testing. If you're like me though....you want more definate PROOF....to *absolutely* rule it in or out. Thats what I'm dealing with right now.

The 41 band is positive on nearly everyones results.....it is the "flagella" or "tail" of the bacteria. Problem is that lots of bacteria have a flagella....so its not specific for Lyme by itself. The 39 band IS highly specific for Lyme. If you have a positive on that particular band than there is no question you would have Lyme. 41 and 39 together = Lyme Disease.

I dont know how far you wanna go to rule this in or out but you could do an antibiotic challenge to see if the 39....or any other bands...go positive.

I'll be back later to read what the doc said. :)

AndreaB Contributor
AndreaB
Posted

Laura,

Thanks for posting your results. So, according to what Rachel said you have bacteria but not necessarily lyme (although it could be).

That's about as confusing as mud isn't it?

Very curious as to what your doctor said.......

CarlaB Enthusiast
CarlaB
Posted

Laura, sorry it's not a clear answer. Like Rachel said, if 39 was +, it would be positive. You might want to do the antibiotic challenge to rule it out at least.

If 41 isn't necessarily from Lyme, then I wonder if it indicates another bacterial problem. I've never heard this addressed in anything I've read.

rinne Apprentice
rinne
Posted
I brought mine to Bioset last night. She looked at it and said "You better start out slow". She tested it and said "2 drops....thats it." :huh:

I told her it says to take one drop and then slowly increase. She said "yeah....you can increase after a couple days...increase to 2 drops a day." I asked how many days I should stay on only 2 drops??

She was like "Ummm.....indefinately....thats all you can handle...2 drops."

How the heck am I gonna kill anything with 2 tiny drops?? :blink:

Rachel, I've read instructions for taking 1/4 of a drop of Samento to start out with for those who are very sensitive.

Patti, sending hugs. :)

Laura, I think Rachel is correct in her assessment of your results and that the worst of not getting a clear yes is knowing that you still haven't got a clear no. What does your doctor think?

I am now up to 30 drops of Samento a day, I've also started taking a Manganese supplement since I was way below the normal range and I've learned that manganese deficiency can be related to diabetes and I see that my insulin levels were on the low side. It seems to me that there are many factors contibuting to my ill health and that addressing the nutritional aspects are critical.

CarlaB Enthusiast
CarlaB
Posted

Yes, the typed out instructions from Nutramedix said 1/4 drop if you're sensitive ... the bottle doesn't say that. To do a quarter drop, you put a whole drop in the water, let it sit for a minute, then divide the water into four doses ... don't try to get 1/4 drop from the dropper! :lol:

I've been taking two drops per day for three days now.

rinne Apprentice
rinne
Posted

Laura, I take it back, 30 is a borrelia specific band, 30 says elephant.

Link:

Open Original Shared Link

“Charles Ray Jones, M.D.

Madison Towers

111 Park St., Suite F

New Haven, CT 06511

Tel. 203-772-1123

happygirl Collaborator
happygirl
Posted

x

CarlaB Enthusiast
CarlaB
Posted

Sounds like your appt. went really well. It looks like you may have someone who will find answers for you! I've been napping, too .... just woke up and it was 5:39 ... Adam walked in about the same time, now the problem is dinner!! :P He seems to be taking responsibility for it, so I think I'll just stay in bed! ;) It'll be a long few days, so I bet I can use the rest ... Dad comes in tomorrow.

AndreaB Contributor
AndreaB
Posted

Laura,

Yea!!!! You found a good doctor! I'm glad she/he is being so thorough.

11 vials.......I don't know how you guys handle all the blood draws. I think the most I've ever had is 4-6.

For those of you who don't go on D/S.....Robbin's last appointment was a disappointment. I'm not clear on whether she's been able to be tested for lyme or not. If anyone wants to go over and read her journal on Daily Strength pm me and I'll give you her user name over there.

miamia Rookie
miamia
Posted

has anyone ever heard of the lyme c6 peptide test

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Miamia,

I'm not familiar with that test. I just googled it and here's what I read...

I am responding on behalf of ILADS. The C6 peptide ELISA (see article below) was touted as a possible "gold standard" for the diagnosis of Lyme disease.What we have found is that the C6 has about the same sensitivity as all other ELISAs - about 50% in the chronic Lyme disease population. This is insufficient for a diagnostic screening test.

The MDL article claims a higher sensitivity (100%) in 52 "characterized specimens" from Lyme patients. These appear to be acutely infected patients. However "four false-positive C6 results were identified in patients that had clinically and microbiologically confirmed Lyme disease but were not detected by the CDC reference methods".

This statement casts doubt on the nature of the patient samples because these results should not be considered "false positive". It appears that the C6 assay works OK with strongly positive samples, but its utility as a screening test for chronic Lyme disease remains unproven.

A danger with this test is that physicians (and insurance companies) will start to deny the clinical diagnosis of Lyme disease if the C6 test is negative, with disastrous results for patients.

One interesting aspect of this study was the poor results obtained with commercial Western blots. The results were all over the place, and the variability shows why "two tier" testing does not work with the current patented Western blots.

The IGeneX Western blot remains the best diagnostic screening test for Lyme disease.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Not sure if I posted this before....

--------------------------------------------------------------------------------

Nine Reasons for False Negative Lyme Disease Blood Test Results

From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

Archived

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

Go to topic listing

  • 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
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      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...
    2. trents
      - 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?

      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...
    3. catnapt
      - 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?

      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...
    4. trents
      - 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?

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

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

      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...
  • 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
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

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

      By trents · Posted

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

      By catnapt · Posted

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

      By trents · Posted

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

      By catnapt · Posted

      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.