Intolerances after going gluten-free

[Jkta]

I'm a newbie mom and I'm just trying to understand something.  I've read a lot of people develop more intolerances after going gluten free.  I'm wondering if someone can help clarify.

For example, if before going gluten-free you were able to drink milk...do you all of a sudden realize that you can't drink milk?! Or is it because you've already always had diarrhea and it didn't go away so you tried to cut out the dairy?  

And if you're asymptomatic, do you suddenly develop symptoms? My daughter is not very symptomatic (at least compared to what I've read) and I'm just wondering what signs I should look for to determine if she's not tolerating something.

Thanks again,

Jamie

 

 

[kareng]

I think that people might not actually be developing new intolerance - it may just be that they are able to identify them now.  You get the Celiac part mostly cleared up and feel lots better and now you notice that when you drink a big glass of milk, you get diarrhea.  Or you eat something and get a headache.  You didn't notice before, because you always had a bit of a head ache and potty troubles.

As an example - a car runs over your foot and you fall on your butt.  You notice how much your foot hurts and don't realize that your butt hurts because the foot is so concerning and obvious and hurts sooo much.  Fortunately, you didn't break anything (yes, that actually often happens when your foot is run over by a car) and they numb your foot to give you some stitches.  Now you realize how much your butt hurts and how big and nasty the bruise is on it.

 

[Awol cast iron stomach]

My opinion/answer is my  experience and reflects my background. My intolerances increase and they were the result of the damage gluten caused. I did not always have them. I believe now I always had a problem with gluten which my story will show I confirmed to myself playing lab rat. The gluten is the trigger (first) the other intolerances came after. I have a long personal experience answer for you, bear with me as I present it to you. I am a biologist, teacher, by educational training  with additional experiences/background in immunology, food/agriculture/supplemental health fields. This question speaks to my background, my struggles, and my personal goal to make sense of it.  My mother said my education/experiences are never wasted and ironically they all converge and are puzzle pieces to my story. Perhaps me posting this personal information will help others and maybe one day researchers or medical Dr's because I do hope all this is worth something.

My personal experience is my intolerances increase  as the immune system tries to determine how it can protect  me from gluten while simultaneously helping  me to heal. My opinion is my hyper vigilant/ protective, healing immune system wants to do it all, but like a military strategist it has to assess the situation and allocate the forces to the greatest need.  Sometimes  the immune system has to make tough decisions and  organs (i.e. individual or forces/troop must be sacrificed). The sacrificed "individuals/forces" are the manifested autoimmune diseases / tissue damage  that occurs based on the immune systems difficult choices. Sacrifice some to save many the rest of the organ systems of the organism.  My immune systems  goal is to help me heal ,while it struggles to protect me, and avoid ( autoimmune disease/tissue manifestation =damage) . My immune system  tries hard to ask for my help sending me signals including intolerances to avoid losing any individual or troops.  It tells me I need help listen to my signals your symptoms-help me help you!

I struggle with diagnosis for Celiac/NCGS and I have intolerance's now. I have been on this path since March 2016. I have struggled to get medical help for GI issues  and other symptoms for 20 years that I now know was always gluten but myself and Dr's didn't know it. I have symptoms going back to 5 years old that I now know are Celiac/NCGS but I don't fit the traditional Celiac so no Dr.  until March of 2016 even thought of testing me .  4 years ago my husband and I realized I was likely Celiac/NCGS/Gluten spectrum issues.  I began to experience drastic frightening edema and neuropathy when I ate even a piece of bread. 

My opinion is that once I am exposed to gluten  a whole cascade begins biochemically/physiologically/ systemically throughout my body. My immune system kicks into high gear. The issues start in my GI system and the "dominos" fall for days/weeks/months after. Not knowing if I am NCGS or Celiac as Dr's struggle to classify me or find  evidence that is measurable by current clinical testing standards. I appear to be sub-clinical and as "lab rats" go I am likely frustratingly non complaint. I prefer to be the researcher not the lab rat. I won't complete a 12 week challenge because frankly I can't. I made it to 6 days taking copious notes on symptoms etc but by day 6 no can do research lab rat project over! While I want to know if I am Celiac or NCGS, I won't play auto immune roulette for anyone or for any diagnosis! It appears from my testing something is going on with my immune system, its not a "true" IgE mediated allergy but the allergist I came across in March 2016 decided to refer me to a Celiac specialist.  My immune system doesn't like wheat, rye, barely and they know it. I have no measurable autoimmune disorders, I prefer to stay that way. What am I clinically I don't know and at this point I don't think their tests reveal it either.

I have a degree in biology , part of my undergrad I worked for my immunology professor, so the immune system always intrigued me.  I spend more time thinking and talking about the immune system then my husband likes. While I am careful to not offend Dr's, I personally have my own hypothesis. Once I went gluten-free and the issues that plagued me began to resolve 3 1/2 years ago, my husband and I knew it was gluten! 

 In March 2016, I got cross contaminated badly and underwent my gluten challenge in Oct 2016.  During this time period my tolerances wax and waned according to the CC and gluten challenge. I feel my immune system over the 3 1/2 years I practiced gluten-free  downgraded the surveillance to gluten proteins. No gluten proteins of wheat, rye, barley here no threat a gluten-free state. During that time my immune system surveillance system no longer having to patrol so hard against gluten downgraded against the evil  gluten proteins. Once my immune system got turned on again to the Gluten protein with the CC in March 2016, when it was reintroduced,  the downgraded surveillance by my immune system switched into high gear realizing the  threat was back, I felt symptoms of being under attack by my beloved immune systems quest, its goal was to protect me . 

After my CC in March 2016 my ability to eat "normal gluten-free diet" declined.  I went very safe whole foods as many on Celiac.com suggest, additionally I focused on anti inflammatory foods, and rotated my foods not to expose my immune system too often to the same items. I wanted to help it calm the surveillance down. Most importantly I listened to my body. If I got joint pain from a food (a symptom I never had before the gluten-free years/CC incident) I recorded it and removed the food item from the diet because I believed my immune system said so, I have kept months of notes of my foods and the preservatives/additives reactions from these in the foods I consumed. Between my CC  in March 2016 and My Gluten challenge endoscopy in October 2016 I had time to practice my self methods for healing and I improved. Then I "ripped off the band aid" played voluntary lab rat and gluten-ed myself failing to complete the challenge and obtain the diagnosis.

It did however confirm to me that gluten is evil, I get annihilated and my immune system goes into high gear. I spend time making it up to my immune system and my body after. I baby the immune system and then add more foods as I get better. Once I did my gluten challenge in October 2016 I set myself even further back as one would logically suspect the immune system was ticked!

During this time I had 8 foods removed from my diet,  I struggle with food industry preservatives/additives so I stick with whole foods initially after CC and after the gluten challenge I spent 5 weeks liquefying my fruits and veggies to help my gi tract and calm down my immune system. No one told me to do it but it works for me. This I have continued to monitor and report to my Dr's as they asked me to join their research study not sure if I will remain in it not receiving a diagnosis.  I focused on whole foods(as many on celiac.com suggest), after my challenge I realized I had to liquefy them, additionally I remained very focused on anti-inflammatory foods, and worked hard to rotate my foods to not upset my immune system. I am now adding more foods and some of the early intolerances I had to remove are safe again. I absolutely avoid gluten, I keep carbs and gluten-free grains at one a day because I am suspecting my immune system has a threshold for these in my gluten challenge after math. I can eat carbs and gluten-free grains now but if I eat above my bodies threshold it manifests an inflammatory symptoms and I note my personal threshold. Additionally I now limit  and track  chemically/artificially created/derived food industry substances ie  preservatives/coloring/ flavor/thickeners/binders etc  (real food derived version of antioxidants preservatives I do not personally note symptoms from) 

So perhaps this answer is more than you expected, but your question really hit home for my personal journey, experience, and background. My opinion gluten is the causative agent  other intolerances result of the aftermath.

Best wishes to your child !

 

 

 

 

 

 

 

 

 

 

 

 

[Awol cast iron stomach]

My apologizes you also asked for symptoms: It depends what I eat and I personally feel I have a threshold based on damage, how long I have gone since last gluten exposure and amount consumed weather CC or given an item that is an actual gluten containing ingredient but told it was gluten-free.

My gluten symptoms are the worst I bloat, (i gain 30 lbs , look 5 months pregnant, within in 45 minutes of ingestion) If I have been gluten-free without exposures for a long stretch I feel my gi (what I think is the first part of my small intestine where I bloat and look preggers) multiple fine needle sharp stabbing pains as I simultaneously bloat.

Over the next few hours the dominoes continue to fall-I begin to swell edema in neck, face, hands, feet, ankles, my gi tract dependent on the amount consumed goes to D or loose stools (often not pure liquid-larger amount of gluten=more liquid stool, CC will be increased bowels/ loose stool consistency as my body works to purge gluten as fast as it can. Then my gi tract shuts down, I becomes dehydrated, constipated which can last for weeks my best efforts of diet and hydration can not reverse this symptom it is only time that resolves C. 

I get neuropathy my arms/wrists and feet/ ankle particularly my big right toe and left arm "fall asleep". I get numb I can actually simultaneously get a shooting pain sensation (like when you stand up after your foot falls asleep that pins and needle sensation. I get both a numb limb on one side of the arm then a shooting pain on the other in the same limb) To me its as if my CNS tells me it is way off/ is confused and doesn't know which signal to send. At this point I get headaches shooting pain left side, my frontal/ethmoid sinus inflame and I feel like a sinus infection comes on. As I aged I no longer went to Dr with this symptom or my IC it was so common. My muscles begin to ache and I get mild involuntary muscle spasms. Particularly my lower back, upper back ,and sacroiliac joint .

Within 2 days - my mood becomes low and I am irritable.  All the above is gluten and probably a few I try to forget-the list is multiple and unrelenting that only time and nurturing my body resolves.

For my non gluten intolerances my body signals with  symptoms of joint (elbows first) , muscle pain of back upper/lower, sacroiliac joint, (the degree of pain again corresponds to the current gi damage I have and the amount consumed I suspect threshold) interstitial cystitis, mild muscle spams in my upper back legs, I get abdominal itching , back itching, and elbow itching. Symptoms start on my left side first then proceed to other side again based on amount I can only flare on left if small amount if larger amount both sides.

For your child-As a child my earliest symptoms of gluten issues were- pressure/frequency IC (no pain), Constipation, hives, itching, sleep issues can't sleep even if tired, irritability. Look for your daughter to describe something is wrong/off but she doesn't know what, but she is not sick and knows she is not sick, sudden expression of anxiety/emotional/ irritable/cry's easily (as her body expresses symptoms she detects but can't assign to anything in particular and she can't control/stop). Let her talk, calm her down, and hydrate her. Nurture her and Nourish her.

Good luck