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

Placebo Effect?

0range

Recommended Posts

0range Apprentice
0range
Posted

For everyone who knows my story, I've been in 'the realm of undiagnosis' for a while now. Many people have recommended that I go gluten-free due to my positive gene test and Hashimoto's, but I'm stubborn about a diagnosis. I recently went on a low FODMAP diet for my IBS (which is lactose-free, gluten-free, etc.) for 3 weeks. As I'm not a known celiac, I was not very strict about cross contamination but did not eat the usual bread, pasta, etc. I eat at university; opting for rice and gluten-free options. Yesterday, I decided to have regular toast for breakfast. I stayed at home all day to finish up my homework, and had rice/potatoes and fish fingers the rest of the day. Yesterday my eyes became very blurry; I couldn't focus on the TV or the clock and had to squint. I also felt manic, unable to concentrate. Towards the end of the day, I felt feverish and cold and had heart palpitations during the night. Today I woke up and felt like I was hit by a truck, and feel truly nauseated. I fell off the bandwagon a week ago when I decided to have regular cake on my mom's birthday as well. After eating, I had a noticeable belly ache on the mid-left side of my abdomen... this is the symptom that I had starting in the summer when I would eat seven-grain bread (and which prompted a Ttg-IgA test in August by my doctor, which was negative). Could this all be IBS? A placebo effect? I'm not sure how I feel so awful considering I have not even been gluten-free for all that long - or even "truly" gluten-free since I haven't been careful about cross contamination. Urgh. Time to pursue a full diagnosis? I'm not sure how open my doctor would be for doing an endoscopy if my blood panel was negative. I don't know if I should wait till I see my dad's doctor, who is much more open and did the Ttg-IgA test in the first place. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Aren't those things bad on the FODMAPS diet?

0range Apprentice
0range
Posted
  • Author

Aren't those things bad on the FODMAPS diet?

 

Hi Kareng!

Which foods specifically from above? If it's the cake and the bread, then yes! I've been low FODMAP except for those two foods over the last 3 weeks. I just don't know what to make of my reaction to them, considering that with IBS, I really shouldn't be :that: sensitive to cake and bread. I didn't have any gut issues per se, except for the brief belly ache, just all these other symptoms that I don't know what to make of.

kareng Grand Master
kareng
Posted

Hi Kareng!

Which foods specifically from above? If it's the cake and the bread, then yes! I've been low FODMAP except for those two foods over the last 3 weeks. I just don't know what to make of my reaction to them, considering that with IBS, I really shouldn't be :that: sensitive to cake and bread. I didn't have any gut issues per se, except for the brief belly ache, just all these other symptoms that I don't know what to make of.

If you have a FODMAP issue, that could be your reaction.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I'm relatively new at this and am certainly no expert... but I don't think negative blood tests are all that uncommon, even when there is a positive biopsy that shows Celiac.  Non-Celiac gluten intolerance is also a possibility.  If it were me I think I would try a strict gluten-free diet (i.e. avoiding all cross-contamination too) for at least 2 - 3 months.  Then on a day when you don't have to go anywhere test it out with a tiny bit of gluten and see what happens.  If you get a reaction then you'll know you're gluten intolerant.  You won't know if it is Celiac or non-Celiac but in the grand scheme of things I don't that really matters.  (Just my .02)

notme Experienced
notme
Posted

thangs that make ya say:  whaaaaaaa? 

 

where does the placebo fit into the ibs mystery?

0range Apprentice
0range
Posted
  • Author

thangs that make ya say:  whaaaaaaa? 

 

where does the placebo fit into the ibs mystery?

 

I think it's just because it just feels like its in my head :( seeing as I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication. Colonoscopy just showed some inflammation etc but it was not significant. I had bad bacteria built up, and was medicated for that. And apparently, now I can't digest bread. I don't know if it's a temporary thing, if I have celiac/gluten intolerance, or something else. It's a bit frustrating. I always thought IBS resulted in digestive complaint such as bloating and diarrhea (which I do have) but I have all these "extra" symptoms that make no sense at all.

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

... I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication.

 

Being able to tolerate gluten and then having Celiac show up at some point, seemingly out of the blue is not uncommon.  Many people do not get Celiac until much later in life - others get it when they're very young.  Sometimes it can be triggered by an illness, pregnancy, trauma, etc.

Up until my diagnosis I could eat gluten with no symptoms at all and only got tested because Celiac runs in my family. 

GF Lover Rising Star
GF Lover
Posted

Hi 0range,

 

I'm just wondering, were you eating gluten free at the time of your test?  Did you start gluten-free after the test result?  

 

Colleen

kareng Grand Master
kareng
Posted

I think it's just because it just feels like its in my head :( seeing as I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication. Colonoscopy just showed some inflammation etc but it was not significant. I had bad bacteria built up, and was medicated for that. And apparently, now I can't digest bread. I don't know if it's a temporary thing, if I have celiac/gluten intolerance, or something else. It's a bit frustrating. I always thought IBS resulted in digestive complaint such as bloating and diarrhea (which I do have) but I have all these "extra" symptoms that make no sense at all.

 

 

You say you had a colonoscopy to look for Celiac?  That isn't the right end.  Did they do an endoscopy, too?

0range Apprentice
0range
Posted
  • Author

I just wanted to say that I really, really appreciate all your replies.

 

Hi 0range,

 

I'm just wondering, were you eating gluten free at the time of your test?  Did you start gluten-free after the test result?  

 

Colleen

 

Hi Colleen, I was not eating gluten-free at the time of my test. The doctor tested my IgA and Ttg-IgA levels before my colonoscopy in August. My gut issues started around March of last year. I was overmedicated on thyroid medication, which caused weight loss and diarrhea (yay wrong dose ._.). And then gut health has been downhill ever since.

 

I did not start a gluten-free diet (mostly low FODMAP, which includes abstaining from wheat, because the dietitian recommended this :)) after the negative test. At the time I didn't think I had a problem with my diet, just that eating a certain kind of bread was giving me a belly-ache which prompted the doctor to check my Ttg-IgA levels. He said that celiac is more common in people with hashimoto's - no one in my family has it however (my dad has a stomach related autoimmune disease called atrophic gastritis). I started low FODMAP only 3 weeks ago, getting tired of my loose stools/bloating/etc. situation. It has helped the bloating. I had toast yesterday on a whim, figuring it was ok to do since low FODMAP is mostly a guideline and you don't have to abstain completely. Then started having some weird symptoms that I didn't have, or didn't notice I had back when I was eating normally. I had a burger today I've regularly ate before starting low FODMAP and have had severe joint pain and fatigue all day. Slept and felt nauseated, a little feverish. Almost kind of classic IBD symptoms (more on that below)... so I don't know if I'm developing IBD, if my body is rejecting crappy food (hamburger I can understand, but regular toast, I'm not sure?). Would it make sense to react so badly to a certain food like wheat just because you have not been eating it for 3 weeks?

 

You say you had a colonoscopy to look for Celiac?  That isn't the right end.  Did they do an endoscopy, too?

 

Hi kareng. I had a colonoscopy because due to my symptoms (feverish, joint pain) the doctor suspected Crohn's, or another type of inflammatory bowel disease. They did not find anything that indicated that, just some inflammation at the end of my small intestine. The biopsy was labelled as "lymphoid hyperplasia" and "focal colitis" indicating that there was just inflammation there which definitely could be the cause of all of this. I'm trying to find more information about diet and lymphoid hyperplasia but have not found anything. No endoscopy.

SimonSez0721 Rookie
SimonSez0721
Posted

Hi, like you I am still in the pre-diagnosis phase so please take my comments with a grain of salt. However, I also had a negative blood panel, which from all, that I have read is very common. When my PCP finally sent me to a GI, I did not ask for celiac testing but mentioned my GI symptoms and negative panel, he immediately scheduled an upper-endoscopy to check for Celiac as well as a couple of other exams. He said, "I don't want you to go another 5-6 years without a proper diagnosis.". My understanding is that a large number of people diagnosed with IBS are actually misdiagnosed Celiacs or non-Celiac gluten sensitive.

Yes, gp get tested. Please get an upper-endoscopy, or maybe other here are recommending the stool, or saliva testing. I do not know. But, undiagnosed Celiac is a problem and it looks like you are a candidate.

Good luck!

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. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.