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My Mom
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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

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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

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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.

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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

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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

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

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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!

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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.

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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

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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