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Gluten Free Can't Tolerate Nuts, Crackers, Seeds, Soy


brookevale

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brookevale Newbie

I have been gluten free for six weeks. Although I experienced more energy and less nausea going gluten free, I was still experiencing severe abdominal pain--so severe that only Neurontin would help relieve it. It was debilitating. I began eliminating ALL grains, nuts, seeds, crackers, and soy. The pain went away. When I tried to introduce each of these one by one, I would experience the horrible pain again. Does anyone have experience with this? I have another CAT scan scheduled this week. My doctor thinks I may have a small intestine stricture or other structural damage from celiac. Also, since I first experienced celiac symptoms, my bile issues have escalated. I haven't had a gallbladder in 13 years and there is definitely a problem with my bile. I can't tolerate fats and when I do eat fats, I get severe spasms in my right side where my gallbladder used to be. Ugggg. I am so frustrated. I am now on a paleo type diet that definitely helps. My doctor wants me to have an ERCP but I am worried about the risks. He also said he may want to go in with a laparascope to see what's going on with my small intestine. This would be surgery and I am worried about that too. I just want to feel better and be able to eat what I want (gluten free of course).


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GFinDC Veteran

It sounds like you are having reactions to other foods besides gluten. That is not unusual for us. Maybe that's all it is. If you aren't already, you might want to try sticking to a whole foods diet for a while and see if it helps.

Skylark Collaborator

With the amount of pain you're experiencing, it sounds like at least the CAT scan is a good idea. Hopefully you won't have to move forward with anything more invasive.

A lot of us do have other food intolerance and soy and other grains are high on the list. You haven't been gluten-free very long. If the CAT scan is negative you might talk to your doctor about what else he's trying to rule out. If he is not concerned about cancer or something that needs quick intervention, you might ask about the possibility of holding off for a few months. Sometimes surprising things happen once you're off gluten and healing from the autoimmune damage.

Consider starting on a gut-healing diet like GAPS. The food list is similar to paleo, but you eat a lot of bone broth, fermented vegetables, and kefir if you tolerate milk. By healing your intestines you may be able to tolerate more foods. Also does your doctor have you using bile salts? It might help you eat a little fat so you can be sure you're absorbing vitamin D and essential fatty acids. Open Original Shared Link

brookevale Newbie

With the amount of pain you're experiencing, it sounds like at least the CAT scan is a good idea. Hopefully you won't have to move forward with anything more invasive.

A lot of us do have other food intolerance and soy and other grains are high on the list. You haven't been gluten-free very long. If the CAT scan is negative you might talk to your doctor about what else he's trying to rule out. If he is not concerned about cancer or something that needs quick intervention, you might ask about the possibility of holding off for a few months. Sometimes surprising things happen once you're off gluten and healing from the autoimmune damage.

Consider starting on a gut-healing diet like GAPS. The food list is similar to paleo, but you eat a lot of bone broth, fermented vegetables, and kefir if you tolerate milk. By healing your intestines you may be able to tolerate more foods. Also does your doctor have you using bile salts? It might help you eat a little fat so you can be sure you're absorbing vitamin D and essential fatty acids. Open Original Shared Link

No bile salts at this point. I will ask the doc about that. Trying to get my fat from avocados, a little coconut, chicken, fish. Thanks and I will definitely take a peek at the GAPS diet.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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