Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Recently Gluten Free, No Obvious Results
0

14 posts in this topic

Hello,

I am new to the board and am here and researching on behalf of my husband. After much research we determined that we thought it was highly probable that he was gluten intolerant and possibly celiac for many years. His list of symptoms points directly at gluten sensitivities. He felt bad enough that he was willing to start gluten-free as soon as we suspected it. He has been completely gluten-free for a short time, a good week and a half, but long enough that we expected some little sign that we were on the right track! I have researched everything I've put in front of him, love to cook and am comfortable with what I have used so far, with the exception of possible cc of a curry powder I used early on. He has not cheated..he has stuck to whatever I have prepared or researched as safe for him to purchase.

 

We had hoped the diarrhea would show some signs of slowing down but he has had no relief. He is not passing any solids..and doesn't seem to be slowing down how often either. We thought that perhaps he was getting relief from night sweats as he had two nights without them..but then last night he had night sweats and some raised an itchy rash on ankles. Sunday he had a panic attack..although it didn't seem to last as long as usual...we feel like we are grasping for straws! We just don't seem to be making any headway at all.

He did a celiac test, it came back negative, but he had been gluten-free for a good week, so not sure whether to trust the results.

 

Any ideas? He has consumed some cheese. Has cut out milk. It seems like with the drastic removal of anything other than the slightest cc..not even sure where that would come from at this point, there should be something noticeable.

Can we be on the wrong track..or is this typical?

 

Thank you for any advice you can give!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Can be typical. It takes time fir the body to adjust.

Cc is probably then issue here. Scratched pans, plastics, wooden items... these things can be cc'd from previous gluten use.

0

Share this post


Link to post
Share on other sites

hi there,

 

there,s many on here that have not been diagnosed celiac. me included. lots of us have other underlying food intolerences that "appear" after gluten has been removed.

you havent said - but im sure you,ve already done it - have you changed all your utensils and checked your pots and pans, replaced the toaster - they can all have trace amounts of gluten in them.

most people have to remove all dairy producs- even if only for a few months til you start to heal

some have a problem with nightshade vegetables - tomato's, potato's, all peppers and aubergine- these contain a chemical that can cause reactions.

and then theres egg and corn and soy - all can cause problems.

it sounds like your husband needs to follow a simple basic diet- meat, rice and veg- potato's if ok. i think theres something called the paelo diet ( not sure if thats spelt right) - a few people follow it on here. that might help.

it would probably help to start a food journal, writing everything down he,s eaten , when and how he feels after. 

you could also ( if he,s still eating the odd pre-prepared food) check for preservitives, additives, colourings ect.

 

sorry if that seems a bit daunting - he,s lucky to have someone completely on his side- as they say!

good luck with it all and i hope your husband finds some relief from his symptoms  :)

0

Share this post


Link to post
Share on other sites

I have not replaced kitchen equipment yet. Spices, all food items I have. I guess I thought such a drastic reduction in gluten would show something, even if I had missed something like counters and boards.

Can this small of a possible cc, result in no improvements at all, in spite of removin all foods?

I think I'm just doubting what I was so certain of a week and a half ago!

Would he benefit from reintroducing a larger amount of gluten? I know he's craving and would be happy to try in hopes that he has zero reaction and can disprove that he might have gluten sensitivity!

0

Share this post


Link to post
Share on other sites

Yep, shared condiments, toaster, wooden spoons, scratched pans. All of these things could be cross-contaminating him. But it could just be that he needs more time. It might be months before his immune system settles down enough to see results.

 

Keep his diet simple. Meats, eggs, fresh veggies, and maybe a little fresh fruit. Think whole foods. Do away with anything processed at first, and don't try any of the gluten-free substitutes for a while. His system is probably hyper-sensitive right now and processed foods will only keep it agitated.

 

Read as many threads here as you can. We all have slightly different stories to tell. Every person's body is different. But don't give up until you have had him on a plain and simple whole foods diet for at least three months. THEN if you don't notice a change (I'm not saying complete relief, but a change) in his symptoms, you might want the doctor to look into other causes.

1

Share this post


Link to post
Share on other sites




I have been gluten free for about a week now and I am going through the same thing.  My symptoms are a bit different (nausea, cramping, vomiting, low energy) but they have been tons worse than before.  Yesterday I came home from work and crashed on the couch.  Did not get up, except for to eat the dinner that my husband brought to me, until I got up to go to bed!

0

Share this post


Link to post
Share on other sites

Sometimes things seem worse, before they seem better.  I hope you will be getting answers soon.

Thanks for supporting him in this!

Diana

0

Share this post


Link to post
Share on other sites

You should eliminate dairy along with gluten.  Dairy can mimick gluten symptoms, until healing can take place.

 

Some people see relief initially and others, many months depending on the level of damage.  Please give it some more time, unless, of course you would like to go the testing route.  In that case he must continue to eat gluten until all tests are satisfied.

1

Share this post


Link to post
Share on other sites

He did say he thought he was sleeping a little better, and that he had a little more energy. I think I'm grasping at anything that could be a sign we are on the right track!

I've been trying to cook a variety of foods thinking it would make the switch easier. Help him not feel deprived, but I think in doing that I may not have been giving his gut time to heal. Will pull back to a little more bland and simple foods for a bit and see if we notice any change. I really was hoping to see a change in the relentless diarrhea sooner. Seems like that alone would be exhausting!

Thank you for the advice...we will keep on this course for awhile longer!

0

Share this post


Link to post
Share on other sites

Oh how I feel your husband's agony!!!

 

Terrible diarrhea was my main symptom and it took a good six months before I saw consistent relief. It was hard staying the course at times but I always did. (No choice, really) I think part of why it took so long was the frequent accidental glutenings, but part was just the body taking time to heal. Had to learn the hard way that eating out almost always exacted a price until I learned a couple good places I could trust. I just dont eat out much or eat much at friends' when I'm invited over. I focus more on the company, so it's not all bad.

 

Luckily other good things happened along the way like, my joint pain going away. Or like your husband's sleeping better and having more energy, those are very good signs, really.

 

So yes, patience is key. I can say now that it was all worth it, so I hope he will say that soon too. :)

 

PS. There was a time when whole foods or not, simple or not, it seemed like like NO food made me feel any better. So sometimes I think we just need to ride the wave... But certainly eating simpler natural foods can't hurt. Now I eat a very healthy, natural whole foods diet, btw.

0

Share this post


Link to post
Share on other sites

I've been trying to cook a variety of foods thinking it would make the switch easier. Help him not feel deprived, but I think in doing that I may not have been giving  his gut time to heal.

 

Starting the gluten free diet is very hard and it takes months to master.  We all suffer the "loss" of many products, but it's easier every day to find alternaltives.

0

Share this post


Link to post
Share on other sites

Has his thyroid been checked? Night sweats, anxiety and a messed up digestive tract can be symptoms of a thyroid under attack (sounds a bit like Graves disease). Thyroid testing could be something to consider at well; if he does get tested, make sure you get copies of the labs and research his results as doctors are notorious for declaring a (thyroid) lab normal when it isn't normal for the patient.

 

Hope he feels well soon.

0

Share this post


Link to post
Share on other sites

Nicole, If I had a dime for every doctor that thought they could diagnose the thyroid on TSH alone I would be rich.

1

Share this post


Link to post
Share on other sites

Perhaps I was just a little impatient...last night was the first night in months that he did not need to get up once for the bathroom. Usually its twice..or more. No night sweats last night. Definitely sleeping better.

Having a hard time wrapping my mind around this. Even though I felt like we had stumbled onto something that connects so many lifelong symptoms. For example...he was on blood pressure meds three years ago...of course that led to a myriad of other drugs including anti depressants. I began to search for natural treatments and came across treatment with magnesium. After much research..we decided to try naturally, with the idea that he might be mineral deficient. We were successful with addition of mineral magnesium and the mineral lithium orotate (mood swings, were trying to naturally replace anti depressants), he was off of all medications, including clonepin, within 3 months and has remained off for almost 2 years. I know we were on right path..although I didn't follow it far enough to find out WHY he might be nutrient deficient.

Patches of dry skin, just below elbows on outside of arms. Panic attacks, extreme fatigue that has gotten so much worse in the last 6 months..and finally it was the diarrhea that led to searching for possible answers. So now that there is the glimmer of hope we are on the right track...its hard to believe this may have been affecting him for years..unknown. It really is a bit overwhelming! Thank you all for the advice. Hopefully he continues to show improvements, even small, to encourage him that we are on the right track!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,337
    • Total Posts
      917,376
  • Topics

  • Posts

    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,468
    • Most Online
      1,763

    Newest Member
    RichieF
    Joined