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gluten-free For 6 Years, Worse Than Ever. Help! New Person Here: )
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34 posts in this topic

Your story sounds a lot like mine. I am a "super sensitive" celiac and my health continued to deteriorate despite being strictly gluten-free. I was diagnosed with mast cell activation syndrome late last summer, like T.H.

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I had antibody testing for food intolerances.  I had trouble with 49 of 60 foods that I was eating. .  I was told I had leaky gut. I cut these problem foods and took IgG supplements and digestive enzymes.  My mind seemed to clear up when I did this.  I found foods that I could eat; I just selected foods that were somewhat unusual like elk, bison, and yak.  Vegetables I tried were fennel bulbs, Jerusalem artichokes, and Kale.

 

I hope you will be able to heal up and feel better.

 

D

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Thanks everyone for your input! I am seeing my doctor next week and I am going to definitely ask to get a repeat endoscopy. I have not had one since my initial diagnosis which did show villous atrophy. Update, I ate a bowl of rice and beans yesterday for the first time in two months and I'm definitely having problems today. Looks like I will have to stay grain free. T.H., I got your p.m., thanks a lot. I am going to look at the FB groups you sent me, and find the info to get tested for this. Symptoms sound very familiar.

Have you considered it might be the beans, not the rice? Look into the fodmaps diet, it sounds like that could work for you from the things you mentioned. It might not fix everything but it sure helped me get my guts in order.

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Do you eat many foods processed by other people?  Has the amount of processed foods you use changed recently?  I am just trying to understand how after 6 years you feel worse.

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Hi,

Are u taking vitamin k2 through diet or pills.

http://en.wikipedia.org/wiki/Vitamin_K2

This was described as activator x by Weston price , missing in modern diet but found in earlier ones

http://www.westonaprice.org/fat-soluble-activators/x-factor-is-vitamin-k2

You can try cheese like Edam , Gouda . If u can't take vitamin k2 pills.

Also, u may want to try

http://www.amazon.com/Grassfed-Organic-Ghee-7-8-Oz/dp/B0032RPLSY/ref=sr_1_1?ie=UTF8&qid=1391095068&sr=8-1&keywords=ghee+organic+grass+fed

Best wishes

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gluteymommy,

 

I sympathize.

 

See my profile

 

Then follow this regimen if I am right you will see improvement in 6 months.

 

It is just one vitamin and one mineral.

 

Magnesium Citrate will help the fatigue, insomnia and give you restful dreams.

 

Niacin(amide) - harder to find than Niacin but flush free/slow niacin will do the same.  There are two forms of B3 the flushing kind Niacin and Niacinamide which doesn't flush.

 

Vitamin Shoppe sells a big bottle of 300 for $20.

 

I studied for 4+ years before I began to understand the heart of my problems was nutrition related.

 

A healthy baby burps and a healthy adult should.  It takes the first six months of a babies life to burp . . then we know he is a healthy growing boy/or girl.

 

Your child might be colicly because this B vitamin deficiency can be passed from mom to child the way it inherited from my mom.

 

35+ years later I begin to diligently apply myself to see if I could figure what had been dogging me all these years and in 6 months of megadosing  with 250/500mg Niacinamide I became regular and have been since.

 

B vitamins being water soluble need to be taken frequently for best affect.  Certainly once a day will get the same result but it won't happen as quickly.  I reccommend 2/day to start but it completely safe to take 250/500 (which ever is easier to obtain) with each meal and at bed time.  The key is to take it until burping.

 

I no longer take the Niacin but still continue and always will take the Magnesium.  Their is a great book called the "The Miracle of Magnesium" in my opinion the cause of most cfs and sleep problems.

 

Once you are burping like a cow chews cud after every meal and you are taking the magnesium citrate 200mg 3/daily I think you will feel 200 percent better.

 

It is called Pellagra once thought cured 75 years ago but still prevelant in over 10% of the population.

 

3 d's of Pellagra

 

Dementia Issues (anxiety, depression, etc)

Digestive Disorder(s) Constipation Diarrhea etc

Dermatitis issues - acne, rosea, dh etc

 

Once you are regular once a day you can try the vitamin d again (salmon is a good source) the fat souble component is causing the issues.

 

Start a good B Complex for stress then depending on what else is still bothering you you can research other mineral or vtiamin deficienies you may have that Celiacs are prone to.

 

Certainly this vitamin and mineral alone will not fix "all" your problems but they can reset your energy and digestive balance giving you a fighting chance at recovery

 

Posterboy,

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Glutenedmommy I am on the same boat as you!

 

I've been 5+ years religiously gluten free, and just got diagnosed with chronic prostatitis. I started my elimination diet yesterday (no soy, cheese, fish, and corn). Hopefully things get better for you and me both! I'll let you know if anything works for me.

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Glutenedmommy I am on the same boat as you!

 

I've been 5+ years religiously gluten free, and just got diagnosed with chronic prostatitis. I started my elimination diet yesterday (no soy, cheese, fish, and corn). Hopefully things get better for you and me both! I'll let you know if anything works for me.

 

Pat,

 

In response to the Chronic Prostatitis,

 

I have had friends mostly women who have had either UTI's or Kidney infections and almost 90+ of the time D-Mannose wiped it out.

 

It is just a simple sugar but really works wonders on E. Coli infections by the E.coli attaching to the sugar and being harmless flushed out of your system.

 

If your prostatitis is caused by E. Coli (as I understand most are according to Medscpape) it should do wonders for it.

 

A low grade version is available as drink under the Cystex Brand from Walgreens.

 

You may need a full strength version available at most vitamin stores to start with then use the Cystex as a preventable.

 

As for the GI symptoms you have been having see my previous post or see my profile.

 

Good luck on the your journey.

 

See the medscape article provide for information only http://www.medscape.com/viewarticle/412693_3 

 

This is not medical advice just my own personal judgment.  Always consult a doctor before making any changes but it is certainly couldn't hurt much.

 

It is commonly found in Melons (Canteloupes) as an example.

 

Posterboy,

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I am also one of the super sensitive ones. I am grain free, refined sugar free, starch free, and just started eating homemade yogurt but otherwise dairy free. So, I eat pretty much no processed foods. If I do buy something processed I email companies and ask about shared lines and facility, I try to stick to items/brands that I know I tolerate but even that can change sometimes. My husband is the only gluten eater in our house and he tries to mostly keep it out of the house. I don't cook any gluten and if he eats a sandwich he prepares it at the table and not in the kitchen. I've still gotten glutened by him but he really does try super hard. I rarely eat out and am always packing my own food to go places. I still have bad days but I would say I have more good than bad now. Oh, we have chickens now for eggs and they are on a wheat, barley, rye, and oat free feed and I do fine with them. I had issues with storebought eggs and I suspect it was gluten in their diet. Also reacted to pork that was raised on rye that we got from a local farm, do fine with corn fed pork. People will start to tell you you're overreacting when you start to talk like this but I've done a lot of trial and error to come to these conclusions. I get the gluten intolerance from both my parents so I speculate that's why I'm so sensitive. Have you had your antibodies tested recently? Or even a repeat endo to see if there's still damage?

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