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LoriG

Not Better 5 Months Later - Please Help!

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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.


Years of symptoms: depression, chronic fatigue, insomnia, irritability, constipation

Hashimoto's/Hypothyroid 2001

Had to go into alternative medicine to get answers

Positive enterolab results 10/07

Gluten free 8/07

Dairy free 10/07

Adrenal fatigue

Still not all that well - looking at other foods intolerances

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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! :)


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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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

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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'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


only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended

*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)

*Winter '06 developed severely swelled legs with rashes, white tongue

*Self-diagnosed; Gluten Free Spring '07

*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)

*Celiac.com diagnosed IC Summer '07

*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

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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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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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!

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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


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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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.


Years of symptoms: depression, chronic fatigue, insomnia, irritability, constipation

Hashimoto's/Hypothyroid 2001

Had to go into alternative medicine to get answers

Positive enterolab results 10/07

Gluten free 8/07

Dairy free 10/07

Adrenal fatigue

Still not all that well - looking at other foods intolerances

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