Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not Better 5 Months Later - Please Help!

LoriG

By LoriG
in Coping with Celiac Disease

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,947
    • Most Online (within 30 mins)
      7,748
    Sinch23
    Newest Member
    Sinch23
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.