Recently Gluten Free, No Obvious Results

[mahart]

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!

[shadowicewolf]

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.

[jhol]

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 

[mahart]

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!

[bartfull]

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.

[kcorcoran2013]

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!

[1desperateladysaved]

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

Thanks for supporting him in this!

Diana

[Lisa]

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.

[mahart]

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!

[gatita]

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.

[Lisa]

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.

[nvsmom]

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.

[guest134]

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

[mahart]

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!