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 Sure What To Do


Aleshia

Recommended Posts

Aleshia Contributor

well, we are on the 4th day gluten free now (3rd full day) my back hurts worse than it ever did before , and krystjan is as irritable as ever.. crying over every little thing, constantly hungry, nothing makes him happy... he seemed to be doing so good... I know that someone did give him a couple of crackers yesterday in childcare at MOPS... :o I forgot they do snacks there so I never mentioned anything to anyone.. I'll have to take a snack for him next time... the only one who seems to be doing good is Zimri... his stools are normal consistency now although sometimes a bit mucosy looking. sometimes I start to doubt myself... "is it really all in my head? am I just trying to find an excuse for my own laziness and lack of consistency?? maybe I am just depressed and imagining that I'm in constant pain..." :unsure: I just don't know what to do anymore.. my husband is supportive in some ways but he just doesn't get how drastic the change needs to be... he isn't willing to get a new toaster or keep all the gluten stuff out of the house... he still wants me to keep up the housework, cook full meals 3 times a day, iron his work clothes, and do educational games with the kids... and more even though my spine constantly hurts now and I am so tired and weak feeling... I'm just not sure what to even eat anymore, I was doing pretty good about not having gluten, then I had a yogurt and got a bad tummy ache and had to keep rushing to the bathroom for about an hour... I don't know if my body is being even more sensitive to the dairy now that the gluten isn't there or what... I made sure the yogurt was gluten-free... and then there is the thing about the tests for the boys... I finally got a dr. to agree to do the stool sample test at childrens hospital so I'm supposed to call and make an appointment to go in and take the samples etc... but then as soon as I got the dr. to agree to that my husband says he doesn't want me to do that till all the bills come in from my tests etc... I know its a money thing and that he is trying to keep on top of bills... but this is important to me and now that I am doing the gluten-free diet when I finally do get to do the test 1. the results probably won't be accurate cause they won't be eating gluten and 2. the dr. is gonna think I'm a nut case for demanding that she do something and then not following through right away :( what if the doctors are right and I don't have celiac disease? :unsure: I'm back to square 1 with my huge list of symptoms that nobody will do anything about...


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor

*sigh* I love my husband dearly and he is normally so good about things but I am getting really frustrated here... "gluten free bread is too expensive" "we're not going out to buy a breadmaker right now" "try the gluten free diet longer and then if it is successful we'll think about replacing things more seriously" "the toaster should be fine if you just clean it out good and run it a few times with no bread it it" :blink: I just don't know what to do... I don't want to be the nagging wife, he's the head of the household but he just doesn't get it!!! how can I know if it is working good enough to give an answer as to whether or not we have gluten intolerance if we are constantly cross contaminated???

home-based-mom Contributor
*sigh* I love my husband dearly and he is normally so good about things but I am getting really frustrated here... "gluten free bread is too expensive"

Look at Trader Joe's. It isn't that bad and if it keeps you from getting sick it is well worth the extra dollar or two.

"we're not going out to buy a breadmaker right now"

That I can see. They are a bit pricey but you can bake bread without a bread maker. In fact one lady at my church had so much trouble adjusting to gluten-free bread making that she gave her bread maker away! :o

"try the gluten free diet longer and then if it is successful we'll think about replacing things more seriously"

If you don't replace at least some of the things, you haven't really tried the gluten free diet and you will never know if it would have worked or not. A package of 4 wooden spoons is a dollar at the dollar store. A colander is another dollar.

"the toaster should be fine if you just clean it out good and run it a few times with no bread it it" :blink:

This one he is really wrong about. It is not possible to cleanse it thoroughly enough. You can get a cheapie toaster at WalMart for less than $10. Use it for the bread you find at Trader Joe's.

I just don't know what to do... I don't want to be the nagging wife, he's the head of the household but he just doesn't get it!!! how can I know if it is working good enough to give an answer as to whether or not we have gluten intolerance if we are constantly cross contaminated???

That's exactly right. If you are constantly cross-contaminated, you are not gluten free, and if gluten is a problem it will continue to be making you sick. :(

psawyer Proficient

I feel your pain. Clearly your husband does not get it. Unfortunately, I don't have any practical suggestions that I can think of at the moment that might help him see the light.

And you are right that you will not be able to tell if a gluten-free diet works for you unless you can follow it strictly. Perhaps you could eat only foods that are naturally gluten-free, and avoid bread completely for a while. No expensive gluten-free bread, and no need to use the contaminated toaster.

Fruits and vegetables and plain meat are gluten-free without costing extra.

I hope things get better for you.

GlutenGalAZ Enthusiast

Some people have a reaction to dairy as they are healing (you can re-introduce it in a couple weeks/months depending on the person) that is why the yogurt could have been bothering you.

In regards to the toaster, if you really like toast I would just get a inexpensive one for your gluten free bread.

You do not need a breadmaker to make bread. I got gluten free pantry sandwich bread mix and made it in the oven...VERY GOOD!! A LOT better than store bread already made.

There are a lot of normal type meals that everyone can eat such as:

*Spaghetti -- using gluten free noodles and gluten free sauce -- Classico red and white sauces are gluten free.

*Tacos -- Ground beef, McCormicks Chili Powder, Tomato Sauce with Mission White Corn tortillas or taco shells (they will say gluten free on the package).

*Thai Kitchen Rice Noodles (gluten free on box) with vegetables can add in chicken or other meat

*Dinty Moore Beef Stew

*If you can have corn and soy then Delimex Taquitos (corn not flour) is gluten free -- not all of the taquitos are gluten free. They also have tamales now.

My husband can eat gluten so we each eat what we want for breakfast and lunch and then for dinner he eats gluten free with me. It was hard and annoying in the beginning figuring out what we could both eat but then as I learned to read lables better and we understood things it got easier. My husband has seen me at my worst and is very supportive with the gluten free diet, especially since I am not rushing to the bathroom all the time.

Have you ever been to a chiropractor for your back? My back got really bad with work and the way I was sleeping and my chiropractor got my back all in place and gave me pointers on how to sleep and easy exercises to strengthen my back muscles. If you go to one for the 1st time just watch out they don't try to get you on a plan.

The first couple weeks are the worst when you go gluten free.

GOOD LUCK --

Aleshia Contributor

feeling better about things, I'm sure that it was glutan that caused my son's regression... things are getting better he just had his first normal bowel movement (ever) and he was really happy all day long, a perfect angel... still having difficulty focusing and concentrating... but at least he isn't whining about everything all day long! :) I'm sure it must be the gluten! also my husband is feeling better about things and "getting it" more!

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,016
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.