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Anyone Else With...

SLB5757

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KateGrace Newbie
KateGrace
Posted

OMG...

I went to the ER once doubled over in severe pain. The curtain on my bed was open a bit and I could see the doctor across the way looking at my xrays. It was quiet in there so I knew they were mine. He said "Oh my God!!" and called the nurses over. They were all pointing at my x ray and one nurse said "Whoa!"

Sandsurfgirl, this story will haunt my nightmares forever! I'm so sorry about that. Pre-this diet, I'd have bad spells where I wouldn't go for over a week. I'd think, "Is this normal?" But I never pictured this scenario.

How long did you "not" go till this happened?

Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption.

My symptoms EXACTLY! When I'm glutened, it's shut-down mode, no BM for 3-4 days, then "pebbles" or stuff with white tissue (sooooorry, too much information. I'm even grossed out writing that), and "mask over eyes" and general crankiness.

Glad I'm not the only one!

Btw, as far as the mis-interpretation of Reba32 and SLB, it's one of the curses of the internet...people have different styles of communicating, and trying to appear warm over a machine can be difficult. But I love this board!

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bridgetm Enthusiast
bridgetm
Posted

Same for me. My aunt put out many options for Easter brunch which were safe for me, but my grandma bought a pie with a bit of a meringue layer and a thin, crispy crust. I have not yet told her about my new gluten-free diet and decided that a large family get-together already just a little tense was not the time to announce the change and the pie was the safest of all the dessert options. I will definitely be discussing the diet with a few family members at a time asap because within 10 minutes of swallowing the last bite of pie crust, I started noticing discomfort and pain and felt my intestines first go hyperactive and then shut down. For the last two days I've been fluctuating between the extremes of that spectrum, but mostly feel like my insides have shut down and every time I eat or drink any amount it just becomes worse.

munchkinette Collaborator
munchkinette
Posted

So you can see constipation on an x-ray? What can you see? I did a google image search, and I'm not sure what I'm looking for. Does it just look like bigger intestines? Or more visible than normal?

Also... where does it all go? I mean, that time I was backed up for 10 days, I was big, but not 30 meals big.

  • 1 year later...
marjean Newbie
marjean
Posted

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

I have been diagnosed with celiac six months ago, and I am trying very hard "to get it right"..Once in awhile I eat something and I notice it had gluten..As far as the constipation, I have had it for a few years. A friend of mine, who is a nurse came over, and I was telling her how tired I am..she said to try flax seed oil, she does, and feels great..so I went to the pharmacy and talk w/ the pharmacist..it helps w/ constipation! Along with arthritis, cardio and vascular..The constipation is not entirely gone, but makes things ALOT better. I dont know if it is the flax seed oil or not, but since I started I dont feel nauseated most of the time either. But my question is..before I was diagnosed I had problems w/ difference food, the skin problems, etc., but I could eat certain foods and it wouldnt bother me, but now that Im diagnosed, I can tell if there is gluten or not, and get symptoms right away. Sometimes I wonder if this is in my head..

beebs Enthusiast
beebs
Posted

Yeah bad. Not to go into to much details but I've had it to the point where I ended up really ill. So yeah -the last thing they think is celiac even though judging from this thread its fairly common :rolleyes:

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  • Posts

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

      By trents · Posted

      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.
    • trents
      Fiber Supplement

      By trents · Posted

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well.  Thanks again (newbie here 😀)
    • Hmart
      Is this celiac?

      By Hmart · Posted

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      Fiber Supplement

      By knitty kitty · Posted

      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
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