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Not Better 5 Months Later - Please Help!

LoriG

By LoriG
in Coping with Celiac Disease

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LoriG Contributor
LoriG
Posted

Hi there,

I really need some help and advice from those who understand. I have been gluten-free 5 months and CF 3 months. My symptoms are: chronic fatigue, depression, irritability, insomnia, and constipation. I have suffered for years trying to figure out what is going on. I was also diagnosed hypothyroid in 2002. Finally, enterolab results gave me hope! I know they don't technically "diagnose" celiac's, but I know I have it looking back over my life and the people in my family as well as the gene results & how sick I've been. I know I read that it takes TIME, but this is hard! I do see a ND who says my biggest problem is malabsorption and it takes TIME.

Anyway, the insomnia got better and the constipation, although, I must have gotten glutened because I am struggling in that area all over again :( & can't fix it now!!

I just started working with a Celiac herself nutritionist who has me increasing my protein a lot, increased digestive enzymes and probiotics. I started taking l-glutamine. I do juicing and exercise. She suggested I wait to do any other food allergy tests, except soy from enterolab (waiting on the test to come).

Maybe I am messing up and don't know it. I'm not even sure if I get glutened because my symptoms aren't direct, immediate, or obvious. I just started going through and double checking again that my supplements/foods are safe. I am the only one in my house gluten-free so I have my own toaster, cutting board. We do all share pots/pans/utensils/collanders, but everything gets washed in the dish washer. I am slowly cooking gluten-free for everyone, though.

My questions are: should I start a simple diet like the specific carbohydrate diet? do I stop eating at restaurants period? do I stop eating foods that could possibly have cc? would soy cause me to continually feel ill with the above mentioned symptoms? what should I eat? ugh!

I am currently on armour for my thyroid and get the "right" tests for that and my thyroid slowly is getting better being gluten-free/cf (i.e. the free t3 is going up to the top of the range).

Why am I not getting better? Please advise. Thanks so much.

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home-based-mom Contributor
home-based-mom
Posted

Soy sauce could definitely be a problem. LaChoy is gluten-free and even though some here on the board don't care for it, I have gotten used to it. I would really hate to give up soy sauce!

Restaurants could be a problem also unless you jump through all the hoops others have discussed. If you are not taking all the precautions, then you are probably at least having cc issues every time you eat out.

Keep reading what others have posted. There is so much to learn! And hang in there cuz it will be worth it! :)

evie Rookie
evie
Posted
Hi there,

I really need some help and advice from those who understand. I have been gluten-free 5 months and CF 3 months. My symptoms are: chronic fatigue, depression, irritability, insomnia, and constipation. I have suffered for years trying to figure out what is going on. I was also diagnosed hypothyroid in 2002. Finally, enterolab results gave me hope! I know they don't technically "diagnose" celiac's, but I know I have it looking back over my life and the people in my family as well as the gene results & how sick I've been. I know I read that it takes TIME, but this is hard! I do see a ND who says my biggest problem is malabsorption and it takes TIME.

Anyway, the insomnia got better and the constipation, although, I must have gotten glutened because I am struggling in that area all over again :( & can't fix it now!!

I just started working with a Celiac herself nutritionist who has me increasing my protein a lot, increased digestive enzymes and probiotics. I started taking l-glutamine. I do juicing and exercise. She suggested I wait to do any other food allergy tests, except soy from enterolab (waiting on the test to come).

Maybe I am messing up and don't know it. I'm not even sure if I get glutened because my symptoms aren't direct, immediate, or obvious. I just started going through and double checking again that my supplements/foods are safe. I am the only one in my house gluten-free so I have my own toaster, cutting board. We do all share pots/pans/utensils/collanders, but everything gets washed in the dish washer. I am slowly cooking gluten-free for everyone, though.

My questions are: should I start a simple diet like the specific carbohydrate diet? do I stop eating at restaurants period? do I stop eating foods that could possibly have cc? would soy cause me to continually feel ill with the above mentioned symptoms? what should I eat? ugh!

I am currently on armour for my thyroid and get the "right" tests for that and my thyroid slowly is getting better being gluten-free/cf (i.e. the free t3 is going up to the top of the range).

Why am I not getting better? Please advise. Thanks so much.

I know how it is to feel like you are having little progress but if you had been sick some time before diagnosed it may take more time to get the small intestine healed enough to feel better making you feel like you have been cc'd. I have been a SLOW healer, took one and one half years before I started to feel progress. Still have to be careful but am much better. not trying to be a downer, just have lots of patience with your innards. :huh: evie

ravenwoodglass Mentor
ravenwoodglass
Posted

Also if you haven't already make sure you check your personal care products, shampoos and conditioners, lotions and makeup. Also be sure to check any meds or supplements you take. Check with the company that makes them, not the prescriber. Even small amounts of gluten in supplements,homeopatics and OTC and script drugs can keep us reactive. It can take a bit to ferret out all the gluten sources, if you are a crafter you should even check all your glues and paints and pet food is another common source of CC. There is a lot to learn but you have come to a good place to do that.

You also may want to consider going with a close to nature, unprocessed diet for a while it will decrease you chances of CC and may help you heal faster.

CarlaB Enthusiast
CarlaB
Posted

If you are 100% gluten-free and are not getting better, I would start looking for what else could be wrong. Read around here, you will get a lot of ideas. :)

scotty Explorer
scotty
Posted

'We do all share pots/pans/utensils/collanders, but everything gets washed in the dish washer.'

i'm going to guess this is holding you back but not entirely your problem...ANY amount can mess you up; at least make you feel stuck in that inescapable rut. i was in your shoes 3-4 months ago--at 5 months in anyway; what made me feel like i could not get out of it was that my step-dad was washing "my" dishes with "there" sponge. and then irealized it was something else as well; then something more...

hang in there it gets better then worse then better then worse. your going to realize that certain things will become bothersome that were once tolerant the more sensitive you become as you try for 100% gluten-free>

i have not done a restauraunt in 5 years

Ursa Major Collaborator
Ursa Major
Posted

If that shared colander is a plastic colander, then you can't get it cleaned of gluten. You would get glutened every time you use it (this doesn't apply if it is a metal one).

You may have a problem with other foods. If you have replaced all your gluteny foods with their gluten-free equals, you may want to reconsider. Your damaged intestines may not be able to handle those hard to digest replacement foods yet.

I agree with the advice of sticking to naturally gluten-free foods for a while. You may even have to stop eating anything raw for a bit. I was unable to eat anything raw (fruits as well as veggies) for six months when I started the gluten-free diet. Raw food (even a salad) would cause instant stomach cramps, and would go straight through me within twenty minutes.

Now I am able to eat limited amounts of raw vegetables and fruits. I guess I have permanent damage because of having been sick for too long. You should be able to eat a normal diet once you are healed. But it takes time, be patient.

Carla is right, though, you may have other problems as well. Some people here have gluten intolerance as a secondary symptom to Lyme Disease, which caused them to have a leaky gut. Heavy metal poisoning can cause the same problem.

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NALPAI Newbie
NALPAI
Posted
Hi there,

I really need some help and advice from those who understand. I have been gluten-free 5 months and CF 3 months. My symptoms are: chronic fatigue, depression, irritability, insomnia, and constipation. I have suffered for years trying to figure out what is going on. I was also diagnosed hypothyroid in 2002. Finally, enterolab results gave me hope! I know they don't technically "diagnose" celiac's, but I know I have it looking back over my life and the people in my family as well as the gene results & how sick I've been. I know I read that it takes TIME, but this is hard! I do see a ND who says my biggest problem is malabsorption and it takes TIME.

Anyway, the insomnia got better and the constipation, although, I must have gotten glutened because I am struggling in that area all over again :( & can't fix it now!!

I just started working with a Celiac herself nutritionist who has me increasing my protein a lot, increased digestive enzymes and probiotics. I started taking l-glutamine. I do juicing and exercise. She suggested I wait to do any other food allergy tests, except soy from enterolab (waiting on the test to come).

Maybe I am messing up and don't know it. I'm not even sure if I get glutened because my symptoms aren't direct, immediate, or obvious. I just started going through and double checking again that my supplements/foods are safe. I am the only one in my house gluten-free so I have my own toaster, cutting board. We do all share pots/pans/utensils/collanders, but everything gets washed in the dish washer. I am slowly cooking gluten-free for everyone, though.

My questions are: should I start a simple diet like the specific carbohydrate diet? do I stop eating at restaurants period? do I stop eating foods that could possibly have cc? would soy cause me to continually feel ill with the above mentioned symptoms? what should I eat? ugh!

I am currently on armour for my thyroid and get the "right" tests for that and my thyroid slowly is getting better being gluten-free/cf (i.e. the free t3 is going up to the top of the range).

Why am I not getting better? Please advise. Thanks so much.

It may yake one year to to notice any sustaining recovery and total recovery if any may take three years. This too only if you are authentically on gluten free diet! There is a lot of cross contamination these days and no body like to tell you "the food that give you could be contaminated with gluten." Everybody is reassuring when the person involved is other than the self. So genwinly remaining gluten free is really tough but it is worth the trouble as gluten causes continues malnuetrtion which if left unattentd may slowly make our lives miserable!

nutralady2001 Newbie
nutralady2001
Posted

What you are describing are also hypo symptoms (I have Hashimoto's Disease) i'd be interested to see your latest labs for TSH, FREE T3 and FREE T4

LoriG Contributor
LoriG
Posted
  • Author
What you are describing are also hypo symptoms (I have Hashimoto's Disease) i'd be interested to see your latest labs for TSH, FREE T3 and FREE T4

I know my thyroid is playing a part, too. This is why it is hard because my symptoms are very common for both diseases.

My tsh level is suppressed, free t3 is 3.3 (trying to get it up to the top of the range which is 4.0) and free t4 is mid range. I am on 3 grains (180mg) of armour.

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