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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,143
    • Most Online (within 30 mins)
      7,748
    Tracy Williams
    Newest Member
    Tracy Williams
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.