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

How Did My Husband Get Better?


moonlight

Recommended Posts

moonlight Rookie

Hi all,

I was thinking - "I learned so much, I want to share this information with others who are having the same problems - Where should I post my message?" I hope, my message will reach to many.

I am a caregiver, my husband has gluten intolerance. He has been having stomach-intestine problems-burbing-jerking in the muscles-shaking-floaters in his eyes-brain fog-extreme tiredness-diarhia, etc for the last two years. most of you may see some similarities -Have been to many Emergency rooms and hospitals several times, tried several GI specialists and neurologists - many said depression or stress go home, take antidepressants or eat healthy foods it will go away, etc. blah blah blah...And, Enterolab results made us try Gluten free life. He has been 100% gluten free for almost one year.

So, I do not want to go through and explain all those difficult times. Even remembering makes my eyes wet. But, I would like to share with you how he got better gradually - and what helped him, My husband had a difficulty in reading the posts here because he was scared, so I became the member and followed the posts here, therefore, I am hoping that I will be able to reach many others by submitting my post here.

We read so many books you cannot imagine. Most of the time, all intolerances and allergies are found related, we realized that all are related with what you eat....but what is eating healthy? We thought we ate healthy.. but he did not get better. so we saw a good nutiritionist. With the guidance of a holistic nutritionist we used supplements to clean his body - basically this cleaned his intestines and got rid of possible parasites.. He also took enzimes with it. later on, we had his mineral balance checked - they were all problematic - nutritionist found that his adrenal gland was burn out - interestingly, my vitamin mineral balance was out of balance too- which was probably due to not having enough sleep, physical and psychological burn out due to caregiving responsibilities, trying to finish a PhD program, plus, radical change in my diet due to his condition... So, here is the last thing we did so far! we quit eating all simple carbohydrates and most of the complex carbohyrates such as wheat/corn/barley/oats/potato, etc. He did not have even a small piece of simple carbohydrate..

so you will ask - how did it go? did this work? YES! During the last 2 years we both cried - he cried because he was in pain, I cried because I couldn't stop the pain or make the pain go away ... so I know how you might be feeling - PLEASE read about carbohydrates and how they relate to adrenal gland on internet. please, please, please try.

My husband lost a lot of weight (40pounds in 2 years, he is 6-2, and went down to 150 pounds) but now he is 158, now his weight is very stable. He says that he is even building his energy back, even though he does not have much muscles left. My husband's best friends are now legumes - nuts - vegetables - olive oil - turkey - red meat - cod/salmon/pollock/tilapia. Now, he can even eat organic tofu and egg. If you ask me how he was on, lets say February, I can say he was not even able to digest raw vegetables and was not able to sleep on the bed.

I hope many will benefit from our experience. I want to list the name of the books we read, but I dont know if it is okay to list them here. But PLEASE read about corbohydrates and adrenal gland, GLUTEN Intolerance it is not just about gluten.

Sincerely.


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

Horray! Glad to hear you're doing so much better. My health deteriorates a lot when I eat carbohydrates. I'm beginning to think I might have a bacterial overgrowth in my small intestines.

Well, I think the diet humans were evolved to eat didn't involve all that much carbohydrates until relatively recently, when farming was "discovered", so to speak. Same with dairy products.

You've stumbled onto what a lot of other people have found, that they're a lot healthier without any grains. Some of us call this a "paleo" diet, closer to what people have eaten for the longest period. You might want to read "The Paleo Diet", by Loren Cordain. He's got a web site at thepaleodiet.com and has some newsletters archived there. I've also found a lot of very good reading at this Open Original Shared Link who did a lot of research into what early humans actually evolved eating.

Ursa Major Collaborator

Yes, it is perfectly fine to post the book titles here. It might help others. I am so glad your husband is so much better. He sounds just like me, except that I had unexplained weight gain, not loss. My adrenals are pretty much burned out, too, and my thyroid is doing very poorly, all from being sick for fifty years because of gluten and other undiagnosed intolerances.

I also eliminated all sources of simple carbs, and the only carbs I get now are from vegetables (and I don't eat potatoes, I am very intolerant to them).

Your husband is very blessed to have a wife who cares enough about him to find out all the information, and is so diligent in researching and trying to make him well. I wished my husband was like you! I have very little support, and that makes it so much harder.

moonlight Rookie

Thank you Nancym for the information.

I had no idea about these things before! I always thought that bread is good!!!

Actually, the information about the negative effects of simple carbohydrates and several potato like starchy complex carbs is out there, but people dont see it, or are not able to make the connection between carbs and gluten problem...You may know, the food pyramid has also been changed! But, when ask to people to image what is in the pyramid, all tells me about the old pyramid. I spent 2 years to learn this.

Last summer, my husband got dierhia, I have him potato and bread, what a stupid mistake!

...At every visit to emergency room, they kept him hours and hours hungary! and sent him home with pain killers --- how could they expect him to take a pain killer to an empty stomach???? So I gave him "baby foods because everthing else was hurting and giving him pain... guess what... things did not get better, because all the baby foods have corn and wheat kinds of things..... Than one wonders, what is going to happen to babies?

And now I see people posting messages as I did last year and saying that they are or their relatives are having similar problems and asking for help! I feel sad, because I know how hard it is..I hope one day somebody will publish something and tell about gluten!

corinne Apprentice

As mentioned, a number of us here eat just veggies, possibly fruit and various sources of protein. The paleo diet is one version of this, the specific carbohydrate diet is another. There have been a number of threads on both diets which you can find on the site search. This kind of diet has helped me when just gluten free didn't work.

By the way, even veggies and legumes contain some simple carbs (fructose, glucose).

bluejeangirl Contributor

I've experimented alot with my diet since I've been gluten free (about 1 1/2 years.) I've known for years now that I can't handle alot of carbs so I also tried the Paleo diet and love being on it but my energy levels went down to low and had a hard time sleeping after awhile. I realized its probably cause I don't have fat reserves since I'm pretty lean. I couldn't eat alot of fruit because I seem to react to salilcylic acids in much of the fruits, so it wasn't the diet for me. I really liked the whole philosophy behind it though, alot of good books on it and great web sites.

I then just went low carb and read the book Life Without Bread by Christian B. Allan, and Wolfgang Lutz. Also a great book and allows you to have about 75 carbs aday in the form of any carb you choose. I've been on this for about 2 mo. now and its working out great. I find it to be not so restricting since I can have a grain if I want to.

I digest rice easier then beans. It didn't matter how long I soaked those little buggers I still had problems with gas. I also found out more food intolerances and finally I'm getting most of my food issues worked out. It takes some time but when you do go through the trouble of writing down everything you eat in a food diary and do alot of research you'll get to the place where your not making the same mistakes over and over again.

I also want to compliment you for working so hard on behalf of your husbands health. {{{{{{{{hugs}}}}}}}}} for your support. Its so great to see that in a couple.

Gail

Nancym Enthusiast

You might also want to read up on Small Intestine Bacterial Overgrowth (SIBO) or Small Bowel Overgrowth (SBO). Basically what it leads to is carbohydrate intolerance, sometimes fructose intolerance too, and lots of nasty, nasty side effects. I just had a course of an antibiotic especially made to treat that call rifamaxin and I'm hoping it'll help. Although, to be honest, I think it is healthier not eating a lot of starches and sugars anyway. But at least I'm hoping that when I do, I won't be punished by weeks of diarrhea.

Just as a warning to anyone undertaking a low carb diet, like paleo or SCD, your body has to undergo quite a transformation because it used to operating on blood sugar (glucose) as the primary fuel. When you switch to a low carb diet you start to run off of either dietary or body fat. It can be an uncomfortable couple of weeks to make the transition. Even after that, if you're a big exerciser it takes a LONG time to be able to do endurance exercise on low carb and you'll never be a huge sprinter on low carb. Those muscles burn glucose under those conditions and the liver just can't produce enough glucose to keep up. However from what I hear your endurance abilities increase a lot since your body gets adjusted to running off of fat and we've usually got a lot more fat stores than we do glycogen stores.


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



Celiac.com Sponsor (A8-M):



corinne Apprentice

I'm not sure why, but when I started the paleo diet, I had no discomfort. My running speed improved a lot (from a 9 minute mile to a 7.5 minute in 6 months) and my sprinting (100 yard intervals) has improved by 20%. My endurance hasn't changed; it's still about 5 hours to walk 20 miles. I haven't tried to find out if my endurance limit has changed; that is painful. Because I had so much D before I started the diet, and none, most of the time now, the differences are probably because I'm absorbing a lot more nutrients which could counter the effects of switching my primary fuel.

Nancym Enthusiast

Do you eat a lot of fruit? That could be why, you're still probably have lots of glucose and glycogen.

corinne Apprentice

That could be. I eat about 3 pieces of fruit a day. Right now, I eat (by % calories) about 15-20% carbs, 50% fat and 30-35% protein. The difference in my health after starting the diet was such a big change that I may not have noticed the discomfort compared to the improvement.

Archived

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

  • 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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.