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I'm *finally* Seeing Progress

julandjo

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julandjo Explorer
julandjo
Posted

So I've been down to 7 foods plus a handful of spices for 8 months now. Eight looooonnnng months. ;) Early last summer, right after going gluten free, I developed a sun allergy, and would break out in hives if I spent more than 5 minutes in the sun with any skin exposed. Well my sun allergy seems to have disappeared just in the last 6 weeks! AND, I'm on day 4 of eating brown sugar, and I feel fine! You guys, this is HUGE. I feel like maybe, just maybe, whatever autoimmune freakout my body went into from the long-undiagnosed Celiac is starting to calm down? A girl can hope, right? Maybe I'll have a more livable diet someday!!!

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CNV2855 Contributor
CNV2855
Posted

So I've been down to 7 foods plus a handful of spices for 8 months now. Eight looooonnnng months. ;) Early last summer, right after going gluten free, I developed a sun allergy, and would break out in hives if I spent more than 5 minutes in the sun with any skin exposed. Well my sun allergy seems to have disappeared just in the last 6 weeks! AND, I'm on day 4 of eating brown sugar, and I feel fine! You guys, this is HUGE. I feel like maybe, just maybe, whatever autoimmune freakout my body went into from the long-undiagnosed Celiac is starting to calm down? A girl can hope, right? Maybe I'll have a more livable diet someday!!!

Julando, may I ask what your symptoms are/were before you started this diet? I seem to have Sjogren's that just won't go away, I'm hopeful that if I'm very faithful one day it'll disappear but idk.

julandjo Explorer
julandjo
Posted
  • Author

Julando, may I ask what your symptoms are/were before you started this diet? I seem to have Sjogren's that just won't go away, I'm hopeful that if I'm very faithful one day it'll disappear but idk.

Well I went gluten free 16 months ago, and after that I just started reacting to so many foods. I eliminated one food after another after another, until I got down to the 7 safe foods I've been on. Reactions for me are typically bad joint pain, anxiety, my guts feel like they've turned into concrete, irritability, and/or left-sided chest pain. I have Celiac Disease, but nobody knows why I cannot tolerate other foods. I've had tens of thousands of dollars of tests run on me, to no avail. I personally think I just need time to heal. Good luck w/the Sjogren's; my mom has that and I understand it's not an easy thing to live with.

lucia Enthusiast
lucia
Posted

I had the same experience after going gluten-free. It was excruciating. I found relief through the Specific Carbohydrate diet (info available at: Open Original Shared Link). I diligently went through the staged process associated with the SCD, and began recovery. (For many months, I ate only fruits, vegetables, and meats; no grains, and even a small bit of rice would start me feeling sick.) My recovery was supported by acupuncture and Chinese herbs. At this point - 16 months after going gluten-free and 10 months after starting the SCD - I'm feeling almost normal. I think my system needed time and support to heal after years of suffering from a gluten-filled diet.

CNV2855 Contributor
CNV2855
Posted

Well I went gluten free 16 months ago, and after that I just started reacting to so many foods. I eliminated one food after another after another, until I got down to the 7 safe foods I've been on. Reactions for me are typically bad joint pain, anxiety, my guts feel like they've turned into concrete, irritability, and/or left-sided chest pain. I have Celiac Disease, but nobody knows why I cannot tolerate other foods. I've had tens of thousands of dollars of tests run on me, to no avail. I personally think I just need time to heal. Good luck w/the Sjogren's; my mom has that and I understand it's not an easy thing to live with.

What are those safe foods? I, like you, have reactions to everything. Fish, tree nuts, coconuts, pork, grain, etc.

I'm 25 years old and I'm doing everything I can to get better... but right now my diet is meat+fruits+vegetables but it's very heavy in nightshades - we're using tomatoes on EVERYTHING.

I've felt particularly bad these last few days so I think I need to cut them out.

Knowing your "safe" foods would be very helpful. I would eat bananas for the next five years if it meant that I could be half as healthy as my friends.

julandjo Explorer
julandjo
Posted
  • Author

What are those safe foods? I, like you, have reactions to everything. Fish, tree nuts, coconuts, pork, grain, etc.

I'm 25 years old and I'm doing everything I can to get better... but right now my diet is meat+fruits+vegetables but it's very heavy in nightshades - we're using tomatoes on EVERYTHING.

I've felt particularly bad these last few days so I think I need to cut them out.

Knowing your "safe" foods would be very helpful. I would eat bananas for the next five years if it meant that I could be half as healthy as my friends.

Well, everybody's safe foods are going to be different. But mine are chicken, beef, carrot, sweet potato, apple, blueberry, and olives/olive oil. For seasonings I can handle sea salt, black pepper, thyme, cumin, garlic, onion. And now brown sugar, woot!

I concur, having a safe list is priceless. Not knowing what foods are making you sick is enough to drive you insane. I'm sorry you're going through this. I hate to say it, but I'd try going off the nightshades and see if it makes a difference. For a long time I held onto white potatoes but gave up all other nightshades. It wasn't until I finally gave the potatoes up that I found my "new normal". It certainly didn't make me feel 100%, but it was a marked improvement. Hang in there!

  • 4 weeks later...
tobewellagain1 Newbie
tobewellagain1
Posted

So I've been down to 7 foods plus a handful of spices for 8 months now. Eight looooonnnng months. ;) Early last summer, right after going gluten free, I developed a sun allergy, and would break out in hives if I spent more than 5 minutes in the sun with any skin exposed. Well my sun allergy seems to have disappeared just in the last 6 weeks! AND, I'm on day 4 of eating brown sugar, and I feel fine! You guys, this is HUGE. I feel like maybe, just maybe, whatever autoimmune freakout my body went into from the long-undiagnosed Celiac is starting to calm down? A girl can hope, right? Maybe I'll have a more livable diet someday!!!

I almost fell off my chair when I saw your post!! :-) After 8 doctors, I thought I was the only person on earth that was down to a handful of foods! lol

Even my current Dr., who is telling me I am most likely celiac (long story...gene test Very High Risk, but I've been almost gluten free for too long for the other tests to say much) thinks my inability to eat so many foods is crazy. I can eat chicken, pork, beef, turkey, lettuce, carrots, cucumber, red cabbage, green beans and Ranch salad dressing...for seasonings I can do garlic, onion and worcestershire (French's). I can do fruit juice but I can't do fruit...apple juice but no applesauce...take some medications in pill form but most only in powder/liquid form! (Malabsorption) Been like this since April. For about 2 months before that I could do cheese, nuts, yogurt but gradually lost those.

What's made things it so hard to diagnose me is that my primary symptom is that foods/medications make my face burn. I have some abdominal symptoms but minimal compared to the face burning. Dr. thinks I'm someone that is starting with neuropathic symptoms.

The Dr. I'm seeing now is an M.D. with Cleveland Clinic but is in their Integrative Medicine Dept. She is going the route of Leaky gut as well because of all the "intolerances" (for lack of a better word) and actually has me on a supplement regime for healing the gut. Hopefully that helps to speed up the healing...I'd love to be able to eat again before 8 mos ;-) but I'll take what I can get at this point. She has me taking L-glutamine, milk thistle, digestive enzymes, fish oil, probiotics and Alpha Lipoic acid. I'm also to be adding Oregano Oil for intestinal bacteria and Candida.

Anyways, just wanted to let you guys know you aren't alone...I definitely thought I was! :-)

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T.H. Community Regular
T.H.
Posted

What are those safe foods? I, like you, have reactions to everything. Fish, tree nuts, coconuts, pork, grain, etc.

A weird question, but what type of water filter do you use? An acquaintance of mine from on-line just got her coconut-allergic daughter to finally start getting better for the first time in her life when they changed their water. They found out that pretty much all charcoal filters - like those used in fridge water filters and Brita ones - are coconut based.

Don't know if this might contribute to your issue, if you're really sensitive to coconut, but thought I'd mention it. :-)

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
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    • lizzie42
      Son's legs shaking

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