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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mmoc
      - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    3. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    4. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    5. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    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

    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.