Please Help...feeling So Discouraged!

[tcla2013]

I am writing as the wife of someone who has been diagnosed with celiac disease (about a year ago now).  At first we thought "hey, this won't be too bad - we just need to buy more fresh whole foods and things labeled as gluten-free....piece of cake!"  WRONG!  It is almost a year later and we have cut out dairy in addition to gluten and we have gotten very serious about cross contamination (he has his own toaster and condiments, etc) and we don't eat out anymore because we don't trust restaurants even when they offer gluten free menus.  My husband is still suffering from celiac symptoms - regular diarrhea, gut pains, gas (really really foul smelling I must add), fatigue, and has even progressed to NEW symptoms he never had before his diagnosis and new gluten-free diet - he now gets a rash on his elbows and back of knees and on his bum and has much more intense reactions than he had before.  We just feel like everything is getting worse instead of better and we really don't know what else to try.  We went to see a nutritionist who seemed to know less about celiac than we did, which was very disheartening.  The advice we keep getting from doctors is to keep avoiding gluten....but it isn't working.  I guess I am just hoping to find some sort of encouragement or advice or suggestions for where to go from here....what else could we or should we be eliminating?!  I just want him to feel better.  The diet is so restrictive and difficult, but it would be worth it if it actually helped him feel good. Going through all of this and living such a restrictive life style is so deflating for him when he isn't seeing any improvement and is actually feeling worse.  He is 27 and had been having symptoms for years before his diagnosis, so I know there has to be some pretty serious damage done to his intestines over time.

 

Any insights or advice would be so appreciated.....thank you!!! 

[fergusminto]

Firstly, don’t despair. There are many of us out there with similar probs and some of us have managed to control them. Doctors/nutritionists, generally, do not understand celiac disease and fail to identify the link between celiac disease and food intolerances. celiac disease damages the gut. I was diagnosed 6 years ago and have learned the hard way just like your husband is doing. I suffered from tiredness, fatigue, headaches, weight loss and a feeling of “down” every morning. Through intolerance tests I found I was intolerant to All dairy, eggs (especially whites), chocolate (no matter how pure) and soya (filthy stuff). Even stopped buying stock cubes as we keep all bones and boil them up for stock. As a result I take NO processed foods at all, cooking from scratch just as we used to do when I was a kid (now 65). Alcohol gives me terrible headaches so I am also “dry” which is probably the most difficult thing socially. I do go to a large number of meetings with business folk but I have to bring my own food and you soon find out that many people have similar problems. Now gaining weight and feeling much better now I know really what to avoid. (btw I am food trained so even more frustrating!).

 

Just come off another bad week. I get EnerG bread (Seattle, and I live in Scotland!) but the pharmacist had to swop to another brand – had soya in it (only a trace) – made me feel awful. Drank plenty of water to clear system.

 

For further good info try the SCD site – I got a lot of good info there. Best of luck – just plenty of good basic home cooked food, meat, veg and fruit. Dairy, eggs and any soya are common problems.

[1desperateladysaved]

It is a strange thing in natural treatments,(such as gluten free diet) so things seem a little worse, the better one gets.  This is all what I think having suffered from celiac 30+ years undiagnosed.  I think what really happens is that the body begins to recover and then we realize when things slip off.  Also, it seems to me the body gets better at letting us know when we make a mistake.  I recently saw this discussed in the book "Say Goodbye to Illness" by Dr. Devi Nambudripad, so I guess I am not the only one that feels that way.  So, if that is true symptoms can be a sign of healing.  Yet, after a year I certainly would be looking for other safe treatments, diets, and other intolerances.  Another look at the basics with even more attention than ever could be helpful.  Whatever you do, don't give up.  I am feeling better and you can find some ways to help.  It can be pretty complicated when one has been sick a very long time.  I have a long list of things which helped me such as supplements, exercises, diets (both inclusions and exclusions) and allergy treatments.

 

Dee

[durrsakja]

Has your husband been tested for SIBO?

[fran641]

I have been gluten-free for 6 months and just recently cut out all dairy like you and also corn. Everything has corn!!! Like your husband the longer I am gluten-free the harder it hits me when something is contaminated. It is also how I began eliminating the dairy and corn. One by one I have to be a detective but it is worth it. When I have good days it is such a relief. Yes it is a lifestyle change but his body is so worth it. I also had Lymphoma twice. I am 67 and it is a debate over whether the lymphoma is related to ciliac or not. I just know that chemo and radiation were not fun and if I have to change foods that's ok.

[Jason-1]

There are a lot of good gluten free foods out there now. If you want to find new foods and everything I would check out the gluten free expos (I think they have an online one also)

I had to eliminate gluten, grains, milk and soy over here. So I mostly make my things in house.

There is also a group on Facebook called Gluten Free Recipes, they are constantly sharing all kinds of recipes and food ideas if you need any ideas.

With celiac, a lot of times you get worse before you get better. So hang in there and it'll pass.

[pghkid33]

There are a lot of good gluten free foods out there now. If you want to find new foods and everything I would check out the gluten free expos (I think they have an online one also)

I had to eliminate gluten, grains, milk and soy over here. So I mostly make my things in house.

There is also a group on Facebook called Gluten Free Recipes, they are constantly sharing all kinds of recipes and food ideas if you need any ideas.

With celiac, a lot of times you get worse before you get better. So hang in there and it'll pass.

 

Hey man, did removing grains, milk, soy help you at all? You were having continuing symptoms despite being gluten-free? If so, what were they?

[rockymtntapper]

I'm sorry this is so discouraging for you. I know how frustrating it is when you're trying so hard to stick to a healthy diet and you still hit setbacks. Have you ever heard of Cyrex labs? They do a lot of different tests for food sensitivities and gut permeability and I'd really highly recommend getting some tests done. I was in the same boat as your husband last year. I had been gluten-free for a year but still felt like crap, in fact I felt even worse than I did before going off of gluten. Constant digestive issues, extreme fatigue, hormonal problems, you name it. I got a few Cyrex tests done and I found out that being gluten-free wasn't cutting it. I'm also sensitive to dairy, corn, amaranth, teff, and tapioca. I was SO overwhelmed by this, but I actually felt better after going off of those foods, so it was worth it. 

 

I think that sometimes you can go on an elimination diet where you cut out all foods that can cause sensitivities such as grains, dairy, eggs, nightshade vegetables, etc., and then add them in one by one to see if you have a reaction. To me, it was worth it just to get the lab work done, but you might want to think about that as well. 

 

Gut healing is a weird thing because it really does seem to get worse before it gets better. Hang in there. 

[kareng]

I'm sorry this is so discouraging for you. I know how frustrating it is when you're trying so hard to stick to a healthy diet and you still hit setbacks. Have you ever heard of Cyrex labs? They do a lot of different tests for food sensitivities and gut permeability and I'd really highly recommend getting some tests done. I was in the same boat as your husband last year. I had been gluten-free for a year but still felt like crap, in fact I felt even worse than I did before going off of gluten. Constant digestive issues, extreme fatigue, hormonal problems, you name it. I got a few Cyrex tests done and I found out that being gluten-free wasn't cutting it. I'm also sensitive to dairy, corn, amaranth, teff, and tapioca. I was SO overwhelmed by this, but I actually felt better after going off of those foods, so it was worth it. 

 

I think that sometimes you can go on an elimination diet where you cut out all foods that can cause sensitivities such as grains, dairy, eggs, nightshade vegetables, etc., and then add them in one by one to see if you have a reaction. To me, it was worth it just to get the lab work done, but you might want to think about that as well. 

 

Gut healing is a weird thing because it really does seem to get worse before it gets better. Hang in there.

I am glad you think they helped you, however, these tests are not currently considered valid.

Open Original Shared Link

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support......"

[MycasMommy]

I went through the whole SCD too. I was still getting sick and I did not know what was causing it. Luckily I can have dairy but it is a huge no on corn. Like it was stated above, corn is in everything. So is soy. I also cannot digest sorghum, millet, nor oats even if they are gluten-free. I am not diagnosed Celiac offically, and I never will be.  I cannot even keep it down and puke within a few minutes to hours of having it in me. It was such a mess and I was sick for so so long. Eliminating gluten made things so much better, but I was STILL getting sick.  I completely understand where your husband is at. I went through the whole SCD thing a little less than a year ago. I just remarked yesterday how MUCH BETTER I am.  I cannot eat out, nope... and sometimes I have an accident and its really horrible.. but I wake without hurting everywhere, I am not tired all of the time, my tummy doesnt hurt, I am so much more alive and more pain free than I have ever been (including as a teen!). One thing my family did for me though.. The agreed amoungst themselves that the whole kitchen would go gluten free and mostly grain free too. I think it really made a difference.

 

ETA: He may be super sensitive.  Have his levels checked in blood work again to see how they are? 

[ezgoindude]

Sup everyone! yea, I relate alot with Mycasmommy.  My blood tests were negative but I have the genes for it..... and the docs KNOW gluten is a no.  But just a few weeks ago I tried to have corn tortillas for a couple days and BAM, its been two weeks and I'm just slowly getting over that decision (loose stools, insomnia, low energy).  As I'm reading more into this many years ago celiacs were told to avoid complex carbohydrates completely,  which makes more sense why SCD/GAPS have a high percentage of resolving dramatic symptoms.  It can take weeks before you know a food is ok or not, and even then it can depend how much you can eat.  I surely do not have the patience for these kind of diseases, its been extremely difficult for me to learn this "step at a time" mentality.  But were here for ya!

[CaliSparrow]

I'm sorry this is so discouraging for you. I know how frustrating it is when you're trying so hard to stick to a healthy diet and you still hit setbacks. Have you ever heard of Cyrex labs? They do a lot of different tests for food sensitivities and gut permeability and I'd really highly recommend getting some tests done. I was in the same boat as your husband last year. I had been gluten-free for a year but still felt like crap, in fact I felt even worse than I did before going off of gluten. Constant digestive issues, extreme fatigue, hormonal problems, you name it. I got a few Cyrex tests done and I found out that being gluten-free wasn't cutting it. I'm also sensitive to dairy, corn, amaranth, teff, and tapioca. I was SO overwhelmed by this, but I actually felt better after going off of those foods, so it was worth it.

I think that sometimes you can go on an elimination diet where you cut out all foods that can cause sensitivities such as grains, dairy, eggs, nightshade vegetables, etc., and then add them in one by one to see if you have a reaction. To me, it was worth it just to get the lab work done, but you might want to think about that as well.

Gut healing is a weird thing because it really does seem to get worse before it gets better. Hang in there.

I also found success with the food intolerance blood test. Mine was a different company. As soon as I eliminated those foods, my inflammation calmed and I could raise my arms above my head (literally was in too much pain previously). I still struggle with my health but quelling the constant inflammation has allowed my gut to heal.