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

Need Help


cj503

Recommended Posts

cj503 Newbie

Hello, all! First off I guess you could say I'm coming here because I don't know what else to do.... My husband has been having stomach problems for almost two years now. It started a couple years ago, when my husband said he just feels so bloated all the time and like the acid is eating away at stomach and insides....he said it feels like a monster in my stomach. When he started having stomach problems he weighed 350 pounds he's now 160. It's like my husband is a different person now...not just in his weight

Now, my husband is the kind of man that doesn't like going to doctors...and when he went to the dr's two years ago, the doc told him your stomach is that way because you are fat and told him to lose some weight....well, he slowly started dropping the pounds...but it was because he was sick. He's always in the bathroom throwing up this sticky phlegmy yellow stuff, he still is...everyday a couple times a day.

Last Thanksgiving was my husbands D-Day....he stomach hurt so bad he went to the er and was told it was gas.... He followed up with a gastrointestinal doctor and after being scoped in every direction it was found that he had H-pylori...some bacteria that I guess we all have, but only bothers some. My husband finally got some hope, but even after the med cycle he was still sick, throwing up, being able not to poop, to pooping uncontrollably, the snake alive in his stomach. Well, after another bout of pain he noticed when he went pee it was darker, we went to the Dr. later and found out he had gallstones....again, my husband finally got some hope that this would end his stomach problem... So, after his surgery his dr put him on protonix's to help with the acid.....wow, was my husband so happy...he felt normal for a change.... But when his insurance changed so did his script and he tried Nexuim, prevacid and another one....he's currently on the prevacid and it's not working too well...he's been on it for over a month, so I suggested that he go back to his regular dr. That's when he told the doctor what has been going on and he diagnosed him on the spot with ciliac...again my husband has hope, but it's only a little...I can tell each day that goes by he expects to feel a little better and he's not... My husband told me last week that if he hadn't gone to the doctors that he made arragements with his friend to take of me and kids, because he was going to end it...my god I'm so beside myself.... He tells me he wants me to understand and I'm trying to, but I don't know what to do, I thought I understood the hell he's going through, but he's insistent that I don't.. He says he wants things normal here and not to be treated different...and we're trying, but he's so different too... I don't know what to say to him, without him snapping..I know he's pain...that's why he snapped...so I don't say anything....I do everything I can to make sure our home is stress free him....but god....I'm just gonna come out and say it...I feel so alone! Where is my husband that I knew? It's like he's disconnecting from everything and we're losing him.... Please, what do I do? Everyday I've been trying to figure out how I can help him...how to just make him smile again, or laugh? I want to stand beside him with this....I love him...we love him!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi and Welcome!

Maybe you could get him to come here and read some of the signature lines of people who have taken years to get diagnosed with celiac disease. If he does have celiac, and he switches to a gluten free diet, he may start feeling better in a few months (or faster in some cases).

Celiac can affect people mentally as well as physically. The gliaden protein can get into the blood stream and affect the brain. That can cause various symptoms, and depression could be one. Insomnia, brain fog, tiredenss, there is a long list of symptoms that celiac can cause. But it one disease where the power to change the symptoms is in our control, without a lot of medicines or surgery etc. Just change the diet.

Has he had the celiac blood test panel? If he had positive results on the blood test then he should definitely try the gluten-free diet. One affect of celiac is malabsoption of nutrients. Malabsorption can lead to weight loss and also vitamin and mineral deficiency. Just the vitamin deficiency by itself can cause major physical symptoms, and mental symptoms too.

Celiac can also be pretty darn painful especially when untreated by the gluten-free diet. There can be lots of gas and bloating in an already inflamed and irritated gut. That does hurt.

There are lots of people here going through the learning phase of adapting to he diet. There is also a pre-diagnosis screening forum for undiagnosed people. If he has celiac the diet is the thing to do, as it makes all the difference in the world for how we feel and how healthy we are.

luvs2eat Collaborator

I used to say it sounded like wolverines were trying to fight their way out of my intestines!! I was lucky, in that I was diagnosed very quickly... only about 3 months after developing unrelenting diarrhea. I never had any other issues... no tummy aches, no nausea, no weight loss (dang... I could have used a little of that one!).

I will tell you that it took an entire year for my bowels to be back to what I considered normal. I made mistakes in the beginning of my gluten free adventure, but I sure don't make mistakes now, as my "glutened" symptoms are much worse the longer I'm gluten free. But, it's not hard to be gluten free!!

As the previous poster said... this forum is my sanity. I can find an answer to ANY celiac-related question here from all those who suffer exactly what I do. I hope your husband finds his way here.

Perhaps an appt. w/ a gastroenterologist who's really versed in celiac disease might help... or finding a celiac support group in your area?

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

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.