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Gluten Reaction?

Emma's Mom

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Emma's Mom Rookie
Emma's Mom
Posted

Hi there - I'm fairly new to these forums but I've been reading through them and you all seem to be full of wonderful advice.

Here's my story - my maternal grandmother is a diagnosed celiac. I suspect both my mother and sister are undiagnosed celiacs. I've been having a bad bout of depression and was reading that this could be associated with celiac disease (and I know you can be completely asymptomatic). I had my blood drawn last Wednesday and went on a gluten-free diet on Thursday. I fully inteded to be gluten-free for at least a month to see if it made me feel any better. I got my test results yesterday and it does not appear that I have celiac disease. Being that I'm a busy mom to a toddler I decided to scrap my original plan of gluten-free eating and had a bowl of Cheerios for breakfast...

...fast forward about 2 hours and I'm so dizzy it's not funny. Even when I lie down the room is still spinning...it's been like this for 2 hours now. So I have a couple of questions...the first is how long does it take to get gluten out of your system? Secondly...could this sudden bout of dizziness be attributed to gluten in the Cheerios I had for breakfast...or might it just be a crazy coincidence. Third...what should I do...do I go back to my original plan of gluten-free eating for a few weeks to see how I feel...or am I just overreacting :huh: Thanks!!!

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Carriefaith Enthusiast
Carriefaith
Posted

You could still be gluten intolerant without having celiac disease. Which tests did you have done? Gluten also makes me dizzy and my reactions can last for a few days or a few weeks, depending on how much I accidently ate.

Rachel--24 Collaborator
Rachel--24
Posted

Many people have negative bloodtests....even some who are Celiac had negative bloodwork but positive biopsy. I'd go ahead and try the diet like you originally planned and see if it works. After a few weeks you can test yourself with gluten. If symptoms return you will have your answer. The gluten challenge is as good a test as any. If your body doesnt like it...you should avoid it.

Lisa Mentor
Lisa
Posted

Cherrios and Milk.......Wheat or lactose problem. My balance was really off before I was dig. I ha ve never been dizzy, but sort of felt that way. Does that make sense :blink:

If you want to try the diet good for you, but if you want to be tested do not go gluten-free.

Sorry this is so short, but have to stir the grits. I will get back to you later.

Mango04 Enthusiast
Mango04
Posted

I get dizzy when I eat gluten as well. I think remaining gluten-free for a month is a really good idea. It's only a month...and it might entirely change your life. You might not even want to eat gluten again after doing so, depending on how much better you might feel....and unless your intending on getting a biopsy, you already had the blood test, so there's no need to have gluten in your system for that. Might as well give it a try.

Guest nini
Guest nini
Posted

I agree, you could be gluten intolerant without full blown Celiac, or just be in the early stages of it, especially since you have a genetic predisposition to it.

Dizzyness is one of my first symptoms of being glutened, and it can last anywhere from a few hours to up to a week... (but I've been gluten free for almost 3 years now so my reactions are very severe even to the smallest amount of gluten)

I was extremely depressed most of my teenage years and adult life... after having my daughter I was put on Paxil... but... after going gluten free I was finally able to go off the meds AND be completely free from depression.

Some people who have Celiac don't have any symptoms at all, and nobody seems to have all of the same symptoms as everyone else with this. It manifests in so many different ways, no wonder the medical community can't figure it out.

I would suggest going back to your gluten free diet, give it a good 6 weeks, then give yourself a gluten challenge... see what happens... if your body doesn't like gluten it will tell you pretty quick (usually)... there are some people who don't have any symptoms at all when "glutened" but they are still doing damage to their villi...

Emma's Mom Rookie
Emma's Mom
Posted
  • Author

Thanks - I actually had to call DH to come home and take care of our DD today...I'm feeling so awful :(

As for what test I had - it was a blood test for endomycelial antibody. The original plan was to stay on the diet for the month regardless of the test results...because I know they can be incorrect...or I could be intolerant/sensitive without being celiac... I guess taking the easy way out this morning wasn't such a good idea after all.

I did go gluten-free for a while when trying to get off of antidepressants for PPD - I seem to recall feeling a lot more energetic at the time. I went back on gluten and don't recall having any problems. Fast forward to now and 1 bowl of Cheerios bringing me to my knees :huh: I suspect it was my body's way of saying stick to it.

Honestly I'm loving the food that I'm eating while on this diet - our dinners are really tasty. I'm just finding it very hard to find things that are quick to prepare for breakfast and lunch...especially while chasing a toddler around all day. I tend to be a picky eater in the best of times... ;)

If this is my body's way of reacting to gluten..is there any way to speed this suffering up? I suspect the answer is no...but I thought I'd ask anyways :)

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Carriefaith Enthusiast
Carriefaith
Posted

I'm not familiar with the celiac blood test that you had done, but here are a list of some others, if you are interested:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

I would guess that you have celiac disease or are gluten intolerant based on your reaction. If you don't want to go back to eating gluten to get a diagnosis, you could have the celiac gene test done.

If this is my body's way of reacting to gluten..is there any way to speed this suffering up?
I suggest getting lots of rest and having simple foods that are easy to digest like plain chicken, 100% orange juice, bananas, ect.
CMCM Rising Star
CMCM
Posted
Hi there - I'm fairly new to these forums but I've been reading through them and you all seem to be full of wonderful advice.

Here's my story - my maternal grandmother is a diagnosed celiac. I suspect both my mother and sister are undiagnosed celiacs. I've been having a bad bout of depression and was reading that this could be associated with celiac disease (and I know you can be completely asymptomatic). I had my blood drawn last Wednesday and went on a gluten-free diet on Thursday. I fully inteded to be gluten-free for at least a month to see if it made me feel any better. I got my test results yesterday and it does not appear that I have celiac disease. Being that I'm a busy mom to a toddler I decided to scrap my original plan of gluten-free eating and had a bowl of Cheerios for breakfast...

...fast forward about 2 hours and I'm so dizzy it's not funny. Even when I lie down the room is still spinning...it's been like this for 2 hours now. So I have a couple of questions...the first is how long does it take to get gluten out of your system? Secondly...could this sudden bout of dizziness be attributed to gluten in the Cheerios I had for breakfast...or might it just be a crazy coincidence. Third...what should I do...do I go back to my original plan of gluten-free eating for a few weeks to see how I feel...or am I just overreacting :huh: Thanks!!!

What really got me on the serious search for information was an intense bout of dizziness. I've had minor dizzy spells before for years and year, just sporadic dizzy spells though, but the one I had last November was a real doozie. It just came on out of the blue, and got progressively worse over about a 10 minute period....to the point where I struggled to my bed because I couldn't stay upright and had this intense vertigo and nausea for a good 4 to 5 hours. I was dizzy with my eyes closed, dizzy with them open, and it was actually worse laying flat down...I had to be a bit upright. I felt like I was going to throw up, but never did. As I lay there in that state, I was trying to think of what I'd eaten that day, and I realized all I'd eaten the night before and all that day were GRAIN things. My reaction started about 3 hours after my last gluten item (a huge bear claw!). Putting 2 and 2 together, I started searching and then found this site. Of course, I had a celiac mom, but wasn't thinking celiac for myself since my symptoms were different from hers and I wasn't underweight. I always thought more along the lines of some kind of dairy problem. Subsequent testing revealed I had 2 genes (1 celiac, 1 gluten sensitivity) and also casein sensitivity, and I was advised to avoid all gluten and all casein.

:(

I still think I react worse to dairy....but my favorite food combination of cereal and milk ALWAYS made me sick...to the point where I just stopped eating that combo a good year or so ago. I guess for me, the milk and cereal was a really deadly combination.

I'd suggest to you get tested...at the very least, do the gene test as that's a good starting point.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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