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100% Gluten Free And Still Symptomatic

IWannaSammich

By IWannaSammich
in Coping with Celiac Disease

Recommended Posts

IWannaSammich Newbie
IWannaSammich
Posted

Howdy.

I was diagnosed with celiac two years ago and have been 100% gluten free ever since. I believe I've been glutened a couple of times by restaurants, but have never once cheated (neither on purpose nor by being lazy about checking ingredients). Despite the painful and socially-isolating vigilance, I remain symptomatic.

I am entirely exhausted. I have occasional numbness in my fingers and toes. My diarrhea is (mostly) in check, but my gut makes amazingly loud noises and I'm nauseous pretty much every morning. Most disturbingly, I can't seem to get a handle on the brain fog.

I guess I'm just wondering how common it is to be vigilant and still feel sick most of the time. Of course, suggestions are welcome, but mostly I guess I'm just trying to determine if the symptoms are in my head and a part of my ongoing, low-level self pity, or if I'm just gonna feel kinda sick forever. (which would suck, by the way)

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pricklypear1971 Community Regular
pricklypear1971
Posted

Have you had vitamin/mineral panels run?

Vit b, full iron including ferritin, vit d, a, k are suggested.

If you are low on those, it can make you miserable...especially neurologically.

Also, has your thyroid been tested and have you been tested for Hashimoto's disease?

IWannaSammich Newbie
IWannaSammich
Posted
  • Author

Have you had vitamin/mineral panels run?

Vit b, full iron including ferritin, vit d, a, k are suggested.

If you are low on those, it can make you miserable...especially neurologically.

Also, has your thyroid been tested and have you been tested for Hashimoto's disease?

I haven't been tested for anything else, nor have I taken any specific steps to alter my diet in any way except for the banishment of gluten. Both of my gastros have been very "Yup. You have celiac. Don't eat gluten any more."

pricklypear1971 Community Regular
pricklypear1971
Posted

I get it.

I felt that way when I was dx'ed with Hashimoto's six years ago. And quite frankly if I wouldn't have gotten the dang rash (DH) I probably would have continued... but here we are, right?

I would ask for vitamin/mineral panels and the Thyroid panel, and a Hashimoto's test (TPO). Your symptoms, above, are indicative of both/either. Celiac can pack a wallop...

Good news, you don't have to wander the aisles of the health food stores if its thyroid or vitamin deficiencies.... thyroid meds are an rx, and vitamin supplementation is pretty straight-forward.

And it isn't self-pity...its being stuck in a spot you can't get out of without help. Thyroid meds and gluten-free helped me ditch the brain fog within a week (meds worked til they didn't, then gluten-free worked... if that stops working I'm up the creek). Proper vitamin supplements helped fix my shaky hands that gluten-free didn't fix, and bad attitude (I was/am low on iron and vit d), and apparently fixed my heart palpitations.

With Celiac its never ONE thing. Hopefully its just one thing TODAY.

koz158 Apprentice
koz158
Posted

No kidding it NEVER is one thing. My fianc

domesticactivist Collaborator
domesticactivist
Posted

You could have other intolerances as well. For example, damaged villi don't produce lactase as well so you may be lactose intolerant. Soy is another common one.

Another thought is you may not be as gluten free as you think you are.

I have a post on the blog linked fromy profile called going 100 % gluten free that may help. Are you vigilant about cross contamination and eating mostly whole foods?

Our family decided to do the GAPS diet to go beyond stopping the damage and forward into active healing. It has made a world of difference.

IWannaSammich Newbie
IWannaSammich
Posted
  • Author

I'm pretty sure I'm 100% gluten free. I'm 50/50 on the whole foods, but the processed foods I eat all proclaim gluten-free status. It is completely possible that I have other intolerances, but I've been hoping against hope that I was the one celiacer that had ONLY celiac.

I guess the biggest problem is that the exhausted, depressed guy doesn't want to blow energy on anything as dreary as finding MORE things that are wrong with me and the energetic, inquisitive guy that used to be shaped like me is nowhere to be found. How in the hell did any of you get over that hump? How long were you messed up before you pushed yourself to seek other solutions?

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lucia Enthusiast
lucia
Posted

The things that helped me were:

-acupuncture & Chinese herbs

-Special Carbohydrate Diet (part of the GAP diet that domesticactivist refers to above)

I was so sick I could barely eat anything. (I had all kinds of tests, and no recommendations besides 'don't eat gluten'. It wasn't enough.)

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm pretty sure I'm 100% gluten free. I'm 50/50 on the whole foods, but the processed foods I eat all proclaim gluten-free status. It is completely possible that I have other intolerances, but I've been hoping against hope that I was the one celiacer that had ONLY celiac.

I guess the biggest problem is that the exhausted, depressed guy doesn't want to blow energy on anything as dreary as finding MORE things that are wrong with me and the energetic, inquisitive guy that used to be shaped like me is nowhere to be found. How in the hell did any of you get over that hump? How long were you messed up before you pushed yourself to seek other solutions?

About two years to decide to go to the doc about the thyroid (I knew what it was, runs in the family).

About three years to see about the lingering thyroid symptoms (DH pressed the point).

So no, you aren't the only one with your head buried on the sand (or HAD it buried....).

Look, you must accept that the inquisitive guy is buried underneath something - thyroid, vitamin deficiency, other food intolerances, gluten in gluten free food.....

I know it's hard. I KNOW. But you must do this. Ask for the tests. Keep a food diary and record good and bad days. Ask for help. You can do this. You can feel better.

pricklypear1971 Community Regular
pricklypear1971
Posted

No kidding it NEVER is one thing. My fianc

sandsurfgirl Collaborator
sandsurfgirl
Posted

First go get more tests. You must have all your vitamins checked. It could be something simple like Vitamin D or iron or whatever.

Next, get the gluten out of your bathroom. Shampoo runs down your face in the shower and gets in your mouth. You run your fingers through your hair and then eat and it's on your food. Lotions and soaps stay on your skin and then you prepare your food.

Keep searching and find out what' going on. Maybe get allergy tested to see if you have food allergies. Try cutting out dairy and soy. Be proactive.

I know it sucks! It sucks so bad. After nearly 2 years gluten free I'm now facing an adrenal tumor and it looks like I have Cushings. I may need to get that adrenal gland taken out. I was hospitalized for 10 days at the beginning of October. I had lingering symptoms like fatigue and weight gain and I buried my head in the sand. I kept saying that I better go get this checked out but I didn't want to deal with it. Until I nearly died and was hospitalized for so long. If I had pushed the issue last year I wouldn't be so sick.

So get to the doctor and insist on more testing!

Roda Rising Star
Roda
Posted

You may also want to consider the possibility that you may be reacting to gluten free products also. There are many on here that react to even levels found in them. There are some of us that can not tolerate any oats even gluten free ones or eat gluten free products that have cross contamination from them.

What about pets? If you have pets you may need to put them on gluten free pet food and use litter without gluten.

AVR1962 Collaborator
AVR1962
Posted

I didn't read all the replies so if this is a repeat of advise, my apologies. If your gut is still noisy I would say it is not just gluten giving you trouble. It may take eliminating one by one to figure out what. Foods to watch out for are: soy, dairy, high fructose, gums such as guar and xanthun. Have you had your thyroid checked? if all is good I would suspect your vits as the possibility for fatigue.....more than likely not getting enough d, or iron, possibly enough magnesium, or a combo. Numbness in limbs could be B12.

Di2011 Enthusiast
Di2011
Posted

I'm pretty sure I'm 100% gluten free. I'm 50/50 on the whole foods, but the processed foods I eat all proclaim gluten-free status. It is completely possible that I have other intolerances, but I've been hoping against hope that I was the one celiacer that had ONLY celiac.

Be aware of xanthan gum and guar gum -- both are usually not listed on the gluten problem lists you'll see and read. In fact they are in most "Gluten Free" products (((check the products on online gluten free shops))). I am also doing a lot of research/reading about the 400's additives many of which are gluten product derived.

Xanthan is often wheat derived (read beyond it being some lab derived bacteria)

Guar is well known and PR'ed as a gluten-free alternative but is actually a gluten plant.

Google and read "Guar gluten -free" as the gluten free seems to dominate the search engine results. If you "-free" taking out the "gluten free" it will find you the articles/webpages about the real guar.

Roda Rising Star
Roda
Posted

Be aware of xanthan gum and guar gum -- both are usually not listed on the gluten problem lists you'll see and read. In fact they are in most "Gluten Free" products (((check the products on online gluten free shops))). I am also doing a lot of research/reading about the 400's additives many of which are gluten product derived.

Xanthan is often wheat derived (read beyond it being some lab derived bacteria)

Guar is well known and PR'ed as a gluten-free alternative but is actually a gluten plant.

Google and read "Guar gluten -free" as the gluten free seems to dominate the search engine results. If you "-free" taking out the "gluten free" it will find you the articles/webpages about the real guar.

While xanthan gum can be derived from various grains and even whey, from what I can find, is that xanthan gum is gluten free and made mostly from corn.(someone else chime in if my information is wrong)

Corn sugar is fermented with the bacterium Xanthomonas campestris to produce a clear, sticky substance known as xanthan gum. Xanthan gum is derived from corn and is naturally gluten-free.

Read more: Open Original Shared Link

Guar gum is extracted from the seed of Cyamopsis tetragonoloba, an annual leguminous plant originating from India and Pakistan, also cultivated in the United States.

Open Original Shared Link

It is gluten free also. However, one can still have a sensitivity to both.

dilettantesteph Collaborator
dilettantesteph
Posted

You may also want to consider the possibility that you may be reacting to gluten free products also. There are many on here that react to even levels found in them. There are some of us that can not tolerate any oats even gluten free ones or eat gluten free products that have cross contamination from them.

I second this suggestion as this was my problem. Super sensitive celiacs need to avoid all possibilities of contamination. That means no restaurants, whole foods only, and careful sourcing of those. It is a lot of work, but well worth it to achieve health like you haven't known in decades.

TTNOGluten Explorer
TTNOGluten
Posted

The things that helped me were:

-acupuncture & Chinese herbs

-Special Carbohydrate Diet (part of the GAP diet that domesticactivist refers to above)

I was so sick I could barely eat anything. (I had all kinds of tests, and no recommendations besides 'don't eat gluten'. It wasn't enough.)

Lucia,

Your story sounds a bit like mine, what kind of additional symptoms were you having, when you said you were so sick it made it hard to eat, and how long did it take you being gluten free to start feeling better??

  • 11 months later...
Debbypete Newbie
Debbypete
Posted

Hi there, how are you today? I was in the throngs of getting diagnosed when you were having your problems. I have found that I can't have maize, or anything that has EVER beeen gluten. I have a re-appearing rash...and I either get headaches, or abdo symptoms from crippling pain to constipation. Not fun, I certainly know how you were feeling back then. :)

H

Really good scratcher Newbie
Really good scratcher
Posted

I wondered about Xantham gum and Guar too! I thought those were safe. Wow the things to avoid! It's a little overwhelming to a newbie.

kareng Grand Master
kareng
Posted

I wondered about Xantham gum and Guar too! I thought those were safe. Wow the things to avoid! It's a little overwhelming to a newbie.

They are gluten free. They are in a lot of gluten-free products. You will find that some people have something else that bothers them. Doesn't mean it will bother you.

Pegleg84 Collaborator
Pegleg84
Posted

If you've been 2 years gluten-free already, the likely it's something else that's bothering you.

A lot of Celiacs (that's what we typically call ourselves) end up with problems with other foods as well. I was in denial for a long time as well, still having other odd symptoms that I couldn't explain. With us, it often comes down to food. If it's not gluten, it's something else.

I'd get bloodwork done for vitamin deficiencies and thyroid problems, but in the meantime do try cutting out dairy for a few weeks. If that doesn't help, then cut out ALL milk products including goat and sheep. You could have an intolerance to Casein (milk protein) rather than lactose (milk sugar). If that doesn't help, cut out soy.

Common food intolerances are to milk (casein and/or lactose), soy, corn, nightshades, grains in general, etc. The only way to know is to do an elimination diet.

It's tough facing the possibility of not being able to eat even more foods (I miss cheese soo soooo much!) but if you feel better, it's worth it.

Also, go through your cupboards and double check that there's nothing that could have gluten in it, INCLUDING all your bathroom stuff. There's a lot of debate whether gluten in things like shampoo and moisturiser could cause a reaction, but it's best to be on the safe side.

Hope you can figure it out soon!

Good luck

Peg

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