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What's My Sensitivity?


HelenaHandbasket

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HelenaHandbasket Newbie

Over a year ago, I had an extreme flareup of joint pain. My knees were the worst. I was wearing braces and using a cane. I thought I had lupus or rheumatoid arthritis. I had every possible fix there could be, cortisone shots, antiinflammatories, etc. No tests came back positive, so nobody really knew what I had, and nothing helped the pain go away. In my desperation, I tried every possible fix I could find on the internet and when I hit on gluten free and tried it, ALL THE PAIN WENT AWAY! It was insane, I couldn't believe it. Thankful, but still, I couldn't believe it. I've been good since and been staying gluten free for the most part. While being gluten free, I also noticed that I don't have the excessive flatulence I always used to have. I just thought I was a gassy person and never attributed it to eating gluten.

So here's my question. I have found that I can eat a little bit of gluten with no repercussions. Bread still gives me mega gas, so I stay away from that completely. Oatmeal doesn't bother me at all and pasta doesn't seem to give me any gas. If I really go off the wagon, I notice my fingers toes start getting a little stiff and sore again, so I know there's some kind of problem. Have I been strict gluten free for a year for nothing, or have I healed something or do I have a particular allergy to something specific and not all glutens, possibly? I don't like restricting my diet for nothing, but I'll die if the joint pain ever comes back. Just wondering what kind of approach I should take.


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Bubba's Mom Enthusiast

Gluten can cause many different symptoms. It's one of the reasons it's hard to get a diagnosis.

Since your reaction is joint pain, you may not see an immediate and severe response after eating small amounts of it.

Those of us with digestive reactions get instant symptoms.

If you are Celiac or gluten intollerant, it's best to keep every trace of it out of your diet. Eating it will cause inflamotory reactions in your body, causing damage. Over time, the effects of inflamation can kick off other diseases, all pretty severe.

In my own personal case I had a laundry list of symptoms, none severe enough for a Dr. to think to test me. It was only when my intestinal damage became so severe that I couldn't eat and was in constant pain that it was obvious something was very wrong.

I hate to say it, but Dr.'s are trained to treat symptoms rather than look for causes of them. They are most likely to write a prescription to alleviate the pain, or similar. By going gluten free you can get rid of the CAUSE. Isn't that a lot better than having your bones degenerate until you're crippled and on heavy pain meds?

HelenaHandbasket Newbie

So even though it appears that I can tolerate it in small amounts, you are saying I'd be better off keeping it out completely? I guess that was what I was getting at. I really hate being a hundred percent gluten free, but if that's what it takes to feel good, then I'll keep to it. I'm still not completely sure what I'm sensitive to. Could it be just wheat and not all gluten? What might be the differences in symptoms if it were merely an allergy vs a gluten intolerance?

For instance, pasta, for some crazy reason, doesn't appear to bother me, not sure why. Different kind of wheat? Bread does me in. This is very difficult to sort out.

Bubba's Mom Enthusiast

Unfortunately, "gluten light" doesn't work. You must be completely gluten free in order to prevent the inflamation that causes your symptoms. Even things like pasta, that don't seem to give you a strong reaction should be avoided. Damage is happening, but you just aren't seeing it. It will be cumlutive though.

Switch to a rice or quinoa based pasta so you can still have your favorite recipes. Smash up Rice Chex cereal to make meatloaf..there are ways to go without gluten and still eat well..in fact if you stick with eating more fruits and veggies, lean meats, and dairy the diet is very healthy.

If you have doubts, write down a list of all symptoms you may have, go completely gluten free for 6 months and see if any of symptoms are gone? if they are...you have your gluten answer.

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    • ehb
      Thank you @knitty kitty this is all very helpful insight, and I was considering doing a strict elimination diet like this. I was considering the one from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC5691745/ which seems a little shorter/less restrictive? But I see how the AIP diet could be better for addressing the general inflammation/autoimmune response. Did you work with a nutritionist or doctors for this? I am very worried about going on such a strict diet without professional support and losing essential nutrients/body weight. If not, how did you know which supplements are needed? I am also struggling in general with managing and maintaining such a strict diet while living a full life as a 27 year old - I travel frequently, and will be doing a cross-country road trip to move for an intense job in the fall, and feel that something like this will be nearly impossible to maintain on the road and during travel. I keep feeling like I can be more strict and deal with this once I have a more stable life, but that stability never seems to come. I am not sure whether to start this now to get it under control for a couple months before the move or wait until I will (hopefully) be in one place for a while after the move. I would like professional help from therapists, dieticians, and doctors to deal with this, but so far they have all been mostly dismissive and not given me many options, which has led to me being dismissive and just following the typical recommendations. No one has taken it seriously and recommended anything so drastic like this. 
    • knitty kitty
      @ehb, welcome to the forum!   Yes, figuring out the gluten free diet and recovery can be really frustrating at the start.  There are things that you can change now which are more restrictive for a while, but they promote healing, and, in future, you'll be able to relax those restrictions.   I found the Autoimmune Protocol Diet most helpful.  It's a very strict Paleo diet, but I started feeling better quickly after doing the "standard GFD recommendations" without improvement.  It's very strict during the elimination phase, but other foods are added back once there's intestinal improvement.  I recommend the book The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself, who developed the diet.   No eating out on the AIP diet.  No gluten free prepared packaged foods.  This removes much cross contamination.  No alcohol.  Alcohol adds to the inflammation and damage.  No oatmeal.  No grains.  No pseudo grains (ancient grains like millet, quinoa, sorghum).  No beans (legumes).  No pulses (lentils, peas).  No nuts.  No seeds. These contain hard to digest lectins that promote inflammation.  No nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades contain alkyloids that cause intestinal permeability (leaky gut). No dairy.  Lactose intolerance (due to damaged villi) and a reaction to Casein (the protein in dairy) are possible.   Casein (the protein in dairy) resembles gluten enough to provoke an autoimmune response by the anti gluten antibodies the same as if it was  gluten.  Corn will trigger an anti gluten antibody response the same as to gluten because the carbohydrate storage protein in corn, Zein, resembles gluten.  Yeast and some rice will also provoke an anti gluten antibody response.  (Basmati rice is the safest.  But no rice on the AIP diet at first.)  Some breeds of oatmeal contain gluten. Gluten can become airborne during cooking. Boiling pasta water in restaurants is one way gluten can become airborne.     Airborne gluten from the ovens at the bakery section of a grocery or bags of dusty flour sacks in the  baking aisle can prompt a reaction.  The airborne gluten gets into the nasal passages which drain into the digestive system.   The autoimmune antibody production process is like an on/on switch.  Pictures are worth a thousand words... So...cut out all the triggers for the anti gluten antibodies, and focus on reducing the inflammation and repairing the damage caused by the antibodies.  Vitamin and mineral supplements help correct nutritional inadequacies resulting from the malabsorption caused by the autoimmune response.  Certain vitamins are needed to lower inflammation.  Others are needed for repair.   Try the AIP diet before considering yourself as having Refractory Celiac Disease.   Celiac is a marathon, not a sprint.  It's do-able.  Put your serious track shoes on.  
    • ehb
      Oh I also drink wine occasionally - I understand the typical recommendation is that wine is gluten free but I don't know how to handle the possible introduction of gluten with fining agents or oak barrels sealed with wheat paste 
    • ehb
      @Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews) at places that were not dedicated, but mostly gluten free where I questioned them to make sure they were following proper cross contamination protocols. I suspect I got glutened back in December from drinking water (but not eating anything) at an italian pizza/pasta place, so since then I'm not even entering gluten-heavy places. For the month prior to my most recent blood test I had only eaten outside my home two or three times at a dedicated gluten free bakery that is owned by a celiac family. I also occasionally (< a couple times a month) will have a labeled gluten-free canned seltzer from a bar, and will ask to open it myself so they don't touch the top of it. Are dedicated gluten-free facilities also a concern with this level of sensitivity - for example if they are using products without gluten ingredients but are not certified? One question I have is if the immune reaction and antibody levels are proportional to the amount of gluten or if it's more of an on/off switch. I am just concerned because I haven't seen any changes at all - I would be willing to be more restrictive if I were confident that it would actually have an effect, but I am feeling quite discouraged living such a restrictive life (even more restrictive than what it seems like is the standard recommendation) without any results at all. Going so far beyond the standard recommendations makes me feel a little crazy like I can't trust anything, but I'm willing to do it if I know it will improve my health. This was helpful for me to take stock of how much I have been eating out of my house, and maybe that should be the first thing I remove completely - thank you! 
    • Scott Adams
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