Increased Sensitivity since going gluten-free?

[Vasiliki]

Hi all,

After going gluten-free for the past month and a bit, I was feeling surprisingly better. (You guys will also be happy to know that after an entire life of symptoms, my MOM finally went to get herself tested based on my experience. THANK YOU ALL for that!)

However, recently I have noticed that the longer I have been gluten-free, the more acutely I notice if I get glutened. At first it was a learning curve, as my husband is not gluten-free (but is transitioning, as I do the cooking). It seems like the longer I experience being gluten free and really being mindful of my foods, the more easily I am able to identify cross contamination.

The reason I bring this up is today I've had the worst attack in a looooong time. My blisters and rash were just starting to clear and my skin was finally healing from my last bought of DH rash in September. I work up this morning furiously itchy, 'bugs crawling under my skin' feeling and the telltale prickles of isolated areas where I could see hives and blisters forming. Nooooo!

Normally my DH stays to my lower legs, lower abdomen and sometimes right above my bum. This time? My ENTIRE chest has flared up! My elbows. My inner arms. My ENTIRE lower back. My ribs. My whole sides. Just WHOOSH!

Not to mention a whole bunch of other symptoms that made for an unpleasant entire morning. My main 'gluten clue' is dizziness. I will get vertigo so bad that I can't stand, and it's not even safe to drive. Of course, that came back too.

I'm just wondering if, as time goes on, do your reactions to gluten exposure get more dramatic? I have pinned it down to three possible items that I may have been exposed to: The quinoa muffins from a gluten-free company, my mother-in-law making me gluten-free cookies the other day (her kitchen is not gluten-free, and when I pressed for clarify she told me she bought new items exclusively to bake for me.... so I'm anxious about that) or there may have been wheat in a beef stock I used the other day but did not list wheat/rye/barley as the ingredients).

My husband is being super supportive, but boy this one caught me for a loop today with it's severity.

 

Would love some perspective from those of you with more years experience working through this process <3

Thank you

-Dee

[Tryingcake101]

Yes,  the longer I go without gluten the less it takes to make me sick. 

[Vasiliki]

1 hour ago, Tryingcake101 said:

Yes,  the longer I go without gluten the less it takes to make me sick. 

Alright, good to know. Thank you! I wanted to check and make sure I wasn't going crazy

 

Also: It turns out the 'gluten free cookies' my mother-in-law made the other day were made gluten free, but when she rolled out and cut the dough she used regular flour.

Most excellent

[Gemini]

vasiliki.....Absolutely!!!!!  You have to remember that when you were eating gluten, you were bloated and sick so the reactions might not have been noticed as sharply as after you clean out your system and then sustain a hit. I had the same experience.  My reactions went through the roof, as far as severity, once I had been gluten-free for awhile.  FYI, I have been gluten-free for going on 11 years next spring.  Once you feel better and then take a hit, it's like getting hit by a truck.

However.......now that I have been gluten-free forever and have healed really well, things have changed again. To be honest, I rarely ever take a hit anymore. The last hit was in Sept. of 2014, from a Wendy's salad. Fast food will never pass my lips again. Way too risky for anyone with Celiac. My gut reactions have tamed way down and those were horrific in the beginning. Now it's the neuro issues, like vertigo as you have stated, that come to the forefront. But the great thing is that I recover much faster than in the early days.  Usually 2 days and I am back on track. Not completely normal but I can go to work and exercise without a problem. That should be the norm for anyone with Celiac, if you have healed well. I was pretty trashed at diagnosis too so this has been a major accomplishment for me.

As for what made you sick, I am sorry to say that it was your mother-in-law's cookies.  They really mean well but no one without Celiac can really understand the cc issue.  If she cooked them on her cookie sheets without parchment paper, you will get sick.  If she used wooden spoons to mix the batter that she has used on gluten batter, then you will get sick. Do not eat any food prepared by anyone else until you understand cc completely and then train them yourself.  Even then, its a gamble.  The muffins could be a possible source BUT if the company was a dedicated gluten-free provider, it's unlikely. Lastly, if the stock you used did not have any listed wheat ingredients, then it most likely is safe.  There are not that many stocks with gluten, although they do exist.  All the ones I have seen with gluten, will list an ingredient that makes that clear. I do not believe in hidden gluten....I think it's a function of learning how to read labels correctly.  That takes TIME!

Congratulations on your mother getting tested! That is so huge!  My mother is like yours....a lifetime of symptoms and after 10 years of nagging her, and recent weight loss again, she tested negative. I have not seen these tests, even though I have asked to see the results, so I am not sure if the negative is true. She is still suffering and will not go gluten-free.

Nothing like having an 83 year old mother with severe acid reflux and brain fog....NOT!!!!!