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

Do Glutened Symptoms Get Worse The Longer You Are Off Gluten...

carecare

By carecare
in Coping with Celiac Disease

Recommended Posts

carecare Enthusiast
carecare
Posted

Hi all,

My husband went gluten free in October and he's improved so much with his symptoms (diahrea, horrible indigestion, not feeling good ...plus some other things I think would be related) He says he's never going back on gluten....especially after cheating on Thanksgiving and having two weeks of... off and on feeling bad. Well, the other evening he had such severe stomach pain that had him on the floor ready to pass out. I actually tried getting him to go to the ER but he refused. He was in the most severe pain. It lasted about 2 hrs and then his stomach just had pain off and on for the next couple days just not as intense. That evening I made taco's and he had the meat on his salad. The taco seasoning was listed as ok to use in the gluten free shopping guide. However, today he says the day before his stomach pain he ate at Taco bell and had the hard shelled taco. He never checked to see if it was gluten free or not (which I can't imagine Taco bell having things gluten free...but maybe they do). I also have been baking a lot the last couple days using regular floor....and I wonder if that's contributing to his pain....if I'm not cleaning good enough or something.

So, if this is gluten related...can symptoms get worse the longer you go without gluten in your system? He said he's never had such severe stomach pain before. I'm just glad he's not getting worse and the pain went away. I'm not even sure this is gluten related...but I am assuming it is.

Another question since I"m at it. My daughter's antigliadin IgA test was a strong positive 5 yrs ago and I was not told this. The other portion of the celiac panel was normal. ...so the dr did not diagnose her as celiac. If that is the only portion of the celiac panel that comes out positive do dr's not even consider celiac? ...and not even tell the patient that that portion of the test was positive...because it doesn't matter to them. I read on here in an article about the antigliadin IgA testing positive will result in 97% of the patients being celiac. Is that really true...if so...geesh...why didn't my daugher's dr tell me this?

CC

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Yes, most definitely the gluten reactions get worse the longer you are gluten free. Taco Bell uses uses wheat in the taco meat. Your daughter more than likely is Celiac. Doctors are notorious for not properly reading results. If it's not all positive, it's negative. You should probably be a gluten free household to keep your dh and dd safe :D

Mtndog Collaborator
Mtndog
Posted

Some people DO get more sensitive at first and if he ate at Taco Bell, I'll bet he got glutened. They are notoriously bad- like most fast food places. Also, if you are baking with regular flour and don't clean up enough (which is almost impossible because all it takes is one small particle) that could cause problems.

When I first went gluten-free, I got about 20x more sensitive- I had a reaction where I too was on the floor writhing in pain. BUT, that type of pain is pretty severe and could have other causes- appendix, gall bladder etc. If he's in that much pain again, I would go to the ER. Much better to be safe rather than sorry.

Hope he feels better soon!

dilettantesteph Collaborator
dilettantesteph
Posted

After two years gluten free, my gluten reactions are much less severe. I only get sick for a day, not a week. I don't lie in bed wishing I were dead, I just have some stomach pain and D. There is hope.

carecare Enthusiast
carecare
Posted
  • Author

I don't know what's up but he's on the floor again today. Currently on the bathroom floor...hasn't moved in the last 45 minutes. Too much pain. Wish he wasn't so stubborn about going to the dr. He feels awful. At least I provided him with a pillow.

We aren't a gluten free household yet....though he is gluten free. I don't know if he's getting glutened or if this is something else??

This sucks.

CC :(

dilettantesteph Collaborator
dilettantesteph
Posted

I reread your post and thought that I should tell you that I have gotten sick from airborne flour before. It lasted longer than a normal glutening. Maybe that is what got to him. Maybe you shouldn't bake with gluten grains anymore. It would be great for him if you could learn to bake with non gluten grains. Then he could enjoy what you bake too.

lovegrov Collaborator
lovegrov
Posted

As with so many other things, it depends on the person. There's no definite answer.

richard

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

Celiac.com Sponsor (A8-M):


OptimisticMom42 Apprentice
OptimisticMom42
Posted

We threw all the flour out. The few gluten foods allowed in the house are treated like toxic cleaning chemicals. Well marked, seperate shelf et. I can't imagine the anger I would display if someone were to use wheat flour in my kitchen.

I know I'm being harsh but YES your baking with wheat flour in the same kitchen where you cook for your celiac family members is making them sick. Please stop.

carecare Enthusiast
carecare
Posted
  • Author

I now actually think he's having gallbladder attacks. He refuses to go to the dr. He said he'd rather live with the pain than have surgery. Guess we wait and see if it happens again. He was in pain this time for about 5 hrs vs 2-3 hrs last week. He read an article about certain foods causing gallbladder attacks...like you were having an allergic reaction. Well, he ingested every food on the list yesterday I think. Makes you wonder. So now along with gluten, he's going to avoid a bunch of other foods.

Hope I can convince him to see a dr. the next time it happens.

thanks for all the advice.

cc

lovegrov Collaborator
lovegrov
Posted

Taco Bell tacos are NOT gluten-free. Whether or not the pain is from gluten, your husband is definitely not being careful enough.

richard

Mtndog Collaborator
Mtndog
Posted
I now actually think he's having gallbladder attacks. He refuses to go to the dr. He said he'd rather live with the pain than have surgery.

Hope I can convince him to see a dr. the next time it happens.

From what I've heard, gall bladder pain can rival giving birth. I never had a serious "attack" but had my gall bladder removed. **IF** it is his gall bladder, you can tell him that there are several of us here who had the surgery and felt much better after.

lovegrov Collaborator
lovegrov
Posted

In addition to feeling much better after having the gall bladder removed -- IF that's what it is -- your gall bladder can become seriously inflamed, and while not as dangerous as appendicitis, an inflamed gall bladder can be serious business. Yes, in rare cases it can kill you if untreated, depending on what you have.

Also, from what I understand, an inflamed or infected gall bladder is much more difficult to remove by lap, which means you'd be more likely to have full-blown surgery.

I am not a doctor nor do I play one on TV. I just have a wife who is nurse and a mother who they thought recently might have a severe gallbladder problem. It didn't turn out to be severe, but she still needs it out.

richard

GFYuleeLady Newbie
GFYuleeLady
Posted
I don't know what's up but he's on the floor again today. Currently on the bathroom floor...hasn't moved in the last 45 minutes. Too much pain. Wish he wasn't so stubborn about going to the dr. He feels awful. At least I provided him with a pillow.

We aren't a gluten free household yet....though he is gluten free. I don't know if he's getting glutened or if this is something else??

This sucks.

CC :(

Hi, I am going on two years of trying desparately to be gluten-free. It is difficult to say the least. You have to constantly be thinking about it. When in doubt, do not eat or drink it. The hidden gluten is something else. I have been making me a notebook for over a while now. I have a receipe section and info section, gluten-free products section and so on. I take my book with me whereever I go. It does help. Hope this helps also

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Picture him on the floor in pain and tell me why you do not have a gluten free household? Now picture you or one of your children on the floor in pain for 45 minutes. It would be a gluten free household right away.

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748
    SarahZ
    Newest Member
    SarahZ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.