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

Severity Of Attacks Worse After gluten-free?

henny

Recommended Posts

henny Explorer
henny
Posted

I'm 5 weeks gluten free with no formal diagnosis other than my entire family having celiac including my mom.

I had an almost immediate reaction to the diet - no more headaches, vastly improved GI and mental clarity.

I have had two 'attacks' in the 5 weeks gluten free where my GI pain, gas, D, nausea, etc. all came back suddenly for a day or so. I am sorry to report that the actual 'attacks' are even more intense than they were when I used to have them almost every day before going gluten-free.

I also have not been able to pinpoint a 'smoking gun' food that caused these two 'attacks' - if it was gluten it was trace amounts, and I don't appear to be reacting to soy or any of the other classics.

On the other hand, I did eat a glutinous cracker and some Ovaltine malt as an experiment and my reaction was very mild in comparison to these two attacks. I had one today and I literally lost consciousness from the pain, which is very low in the abdomen so not galbladder.

So, what do you think of all this? I am not sure if there is something else going on or is this something that happens with gluten intolerance? Severity increasing as frequency decreases.....unknown sources causing huge reactions while knowns causing mild ones.....

The good news is that most of the time I feel like a million bucks due to the gluten-free diet! It's amazing what a difference it made :)

I just need to figure out what is causing these attacks....is there another cause I should investigate?

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

Celiac.com Sponsor (A8-M):


mhb Apprentice
mhb
Posted

I have heard a number of times that reactions can be stronger once going off gluten. In my case I even have different symptoms, getting slightly nauseous which was never a symptom before. I think I might also have experienced what you describe as having stronger reactions to small amounts of exposure with larger reactions to less exposure, or vice versa, depending on the alignment of the planets and stars. I'll be interested to hear if others have experienced this also. It's quite an odyssey for many of us!

henny Explorer
henny
Posted
  • Author

Indeed! This is quite a roller coaster ride! Luckily for me there have been far more ups than downs, but the downs are quite spectacular! :lol:

Prudence Rookie
Prudence
Posted

I was diagnosed this past August with Gluten Intolerance (the blood test for Celiac being inconclusive). Anyway, since I have been on the diet change, I have been doing much better. Its been a major adjustment for me to avoid eating gluten, and sometimes I mess up. When I have eaten Gluten, I usually pay for it for the next 24 hours with the usual symptoms. What worries me though, is that I have been having these "attacks" since my diagnosis, which are much more severe that the usual symptoms of Celiac. It seems to come and go, and doesn't happen everytime I eat gluten. When I have these episodes, the bathroom visits are much more severe, like water, and I am nauses until I vomit violently, lightheaded to the point of almost passing out... its really odd. The next day I'm fine. I have had 3 seperate episodes over the past 6 weeks. I thought it might just be a bug, but now I am starting to think otherwise... Does this sound like what you are experiencing as well?

henny Explorer
henny
Posted
  • Author

YES! yes yes yes!

That sounds exactly what I have been experiencing. 3 times in 5 weeks this has happened.

sorry to hear you're having it also :(

happygirl Collaborator
happygirl
Posted

From

Fasano A, Troncone R, Branski D (eds): Frontiers in Celiac Disease. Pediatr Adolesc Med. Basel, Karger, 2008, vol 12, pp 172

Prudence Rookie
Prudence
Posted

Thank you for the post Happygirl. Its sort of a relief to know that these espisodes are related to the Celiac, and not some other condition I'd have to worry about. Its also depressing. I guess I have been trying to figure out a way to cheat now and then, but its just not possible. Its also a huge relief to know that I'm not the only one that this has been happening to. Thank you for the original post Henny.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

My gluten reactions were also much worse after going gluten free after the first month or so. Also there were more symptoms all at once. So bad that I felt like killing myself several times. I never passed out though. Sorry you experienced that. Of course you are concerned. After about a year they are much better. I don't know if it is just because I am better at avoiding gluten now. My son, diagnosed at the same time also seemed to follow the same pattern. You have something to look forward to.

mhb Apprentice
mhb
Posted

Do most people have the same symptomatic reaction to gluten each time they are glutened? It seems like sometimes I get a headache, sometimes loose stools, sometimes very bloated, but not usually all three.

Prudence Rookie
Prudence
Posted
Do most people have the same symptomatic reaction to gluten each time they are glutened? It seems like sometimes I get a headache, sometimes loose stools, sometimes very bloated, but not usually all three.

I know what you mean. Most of the time that I accidently eat Gluten, I will have at least D. But not always the violent reaction I mentioned before, which is why it was bugging me. I'm just glad to know that other people have had similar reactions, albeit not every time they eat gluten. I hope this helps.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.