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

My Mom


hddaina

Recommended Posts

hddaina Newbie

Hello, I am new. My name is Daina. My mother, I believe, has this disease. My mother has been housebound for at least a year, we thought it was IBS. My mother refused to have a colonoscopy and couldnt even go to a doctor if she wanted because of the constant bathroom trips of diareah and constipation. I saw a news report on this and thought to try it - My mother has not eaten gluten for 4 days now, her pain in the stomach ceased BUT i'm not sure if this is usual: my mother is severly constipated, she goes frequently to the bathroom, its gas or liquid but she "feels" she has a huge one to come out but cant pass and she screams in pain cause of it. She hasnt slept in days either. I have been staying with my Mom after work and I am ready to collapse because I cant stand to see her like this. Please understand BEFORE she screamed all the time with pain but since she stopped gluten that pain stopped, its only the awaiting of this huge one making her have pain(a little blood-I think cause she goes so much she sometimes bleeds a little) and lack of sleep. Im sorry, I have noone else to ask and everyone seemed so nice on the message boards. I want to see my Mom back to normal, without pain. I would appreciate any advice. Does it take time to heal? Stop dairy? Take Citrucel? Laxatives?Im so confused. Thank you in advance! Daina


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



Celiac.com Sponsor (A8-M):



j9n Contributor

I am so sorry your mom is ill. I, too, have been very ill for over a year now and getting out of the house can be difficult at times. My son has been such a help to me, it is so wonderful to have such caring children.

I don't have any advice for the constipation since I have the opposite problem but I am sure there are others here who can help. I do know I lived on peppermint tea for stomach pain, it really helps. Also altoids have peppermint oil and they help when I am somewhere I can't have tea. Chamomile tea is good too. I would encourage her to see a doctor, though. There are so many things that can cause those symptoms. She shouldn't have to suffer so much. I know for me it was hard to go to a doctor at first, you are so afraid of what they might find. But after the first visit it got easier. The colonoscopy was not bad. I was actually surprised how much better i felt during the prep and the day after. It was the first time in a long time I wasn't in pain.

Good luck

tarnalberry Community Regular

She really does need to get in to see a doctor. Any way possible.

As for constipation... My doctor had suggested Senekot (a natural laxative), but I hesitate to suggest that here because you don't know what's causing the constipation and don't want to make the situation worse.

burdee Enthusiast

Hi Daina: I had celiac symptoms for years before I realized I had celiac disease, went on the gluten-free diet and then was diagnosed. My primary symptoms were constipation, abdominal pain, bloating and gas. Longterm constipation (esp. straining to 'go') gave me hemorrhoids which are swollen blood vessels in the rectal area (either internal or external). Those made me feel like I still 'had to go' even after I had a bowel movement, because I sensed 'something' (actually swollen hemorrhoids) in my rectum. Swollen hemorrhoids will bleed after frequent straining, but will also hurt so terribly that you just want to empty out whatever's causing the pressure. After I finally had hemorrhoid surgery (in which the internal hemorrhoids were removed) and healed, that pain subsided. Meanwhile the abdominal bloating and sharp intestinal pain (sometimes felt like bits of glass moving through my intestines, somes felt like menstrual cramps, sometimes felt like my intestines were exploding) was MISdiagnosed as 'IBS' (which is not a disease, but merely a descriptive term.

When I finally suspected celiac disease, I began to avoid gluten. That eliminated much of the pain, but the bloating and gas (even when I wasn't constipated) STILL made me feel like I had to "go" much of the time. My rectum was empty, but my intestines were bloated and swollen with gas, because they reacted to foods I ate. I also passed lots of mucous when I experienced lots of pain. Every time I had a gluten 'slip' all those symptoms PLUS terrible pain would return, but even avoiding all gluten never made them completely disappear. HOWEVER, when I eliminated DAIRY as well as gluten, my gas and bloating and much of the constipation disappeared.

Now I really focus on consuming lots of liquids and fiber from fruits and vegetables as well as higher fiber grains (check the fiber content on gluten-free grain products). I also take magnesium supplements which help maintain regularity. I'm hesitant to take any drugs or fiber supplements, because using high fiber fruits/vegies/grains naturally forces me to eat a healthier diet. Also I react badly to most laxatives which contain sorbitol (an artificial sweetner which can induce diarrhea to resolve constipation). Most junk foods (even gluten-free snack foods) are devoid of fiber. High fiber fruits include apples, pears, berries. High fiber vegies include brocolli, brussel sprouts, onions, cabbage (all from the onion family), carrots, celery, okra, green beans. Most lentils (peas, beans) are VERY high in fiber. All nuts are high in fiber. Some of the gluten-free breads are higher in fiber, so you have to read labels. I have added brown rice bran to soups and sauces to increase the fiber content.

Your mom may not resolve longterm regularity problems overnight, but avoiding gluten or any other allergens which cause gas and bloating will eventually help her feel 'empty' after elimination, rather than feeling like she still 'has to go'. However, she might also have swollen hemorrhoids which cause those feelings.

BURDEE

hddaina Newbie

Thank you everyone!

I so appreciate the support and each of you for all the information. I know noone can really diagnose whats wrong but you gave a very scared 36yr old daughter the confidence her mom, her best friend, may be on the right path. As soon as she is able I will take her to a family doctor and ask to test her for this disease. Is there a specific test? Is it a simple stool test?

Thank you again, Daina

  • 5 weeks later...
liltini Newbie

try blood work... thats how my mom found out she has celiac disease

  • 4 weeks later...
Littlewolf Newbie

I hope she goes to a doctor soon! Blood is never a good sign and she should be checked for damage to her intestine if not for colon cancer.

Good luck!


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Well, if you decide to get her a laxative Fiberlax IS gluten free. She shouls still see a md because OTC med's are only a temporary fix, but if you want to play it safe go gluten free and get Fiberlax.

burdee Enthusiast

Daina: There is a simple stool test for celiac disease available. Check out www.Enterolab.com. I did my tests for gluten and milk intolerance and the celiac gene through that lab. It was simple, noninvasive, expensive, but well worth it. However, most doctors will test for gluten antibodies in the blood or an intestinal biopsy to show damaged villi from autoimmune antibody damage. Hou and your mother have to decide whether you need your current doctor's validation to use the gluten free diet to heal celiac disease damage or you just want to know whether she has gluten or milk intolerance and the celiac gene.

BURDEE

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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748

    Teagan
    Newest Member
    Teagan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.