Jump to content
  • 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):

Please Help - At My Absolute Wits End!


lvpriest

Recommended Posts

lvpriest Apprentice

Hi all,

I'm at my absolute wits end and really hoping you incredibly knowledgable and supportive lot might be able to help me out.

Brief backround - stomach issues since very young. Bloating, excessive d, and for the longest time have had no idea why. After a period of immense stress about a year ago, was forced to take a day off work with the most catastrophic stomach pains and D I have ever, ever experienced. For no rhyme or reason (i.e. it didn't appear that I'd eaten anything that could be food poisoned). From that day on, my stomach has been horrendous - I pooped every time I peed, yellow poop, bloating after eating anything, increased anxiety and depression(resulting in me being put on Cipralex), dry, red painful rash in my hairline - the works. Ended up being referred to a gastro who ran tests and celiac came back weak positive, which doc dismissed as negative, even though I told him I barely ate gluten anyway. Now referred to a dietician who is working with me on the FODMAPS diet.

Anyway, I have been off the Cipralex for about three months (and no longer taking the Colpermin prescribed by the gastro) and have cut out gluten and dairy (have been intolerant since a baby, mother revealed to me only recently!) and also trying as hard as possible to follow the FODMAPS.

Have been feeling a lot better - rash cleared, anxiety/depression gone, and generally, stomach is better. But the last few days, it's been utter hell and horrendous and I just don't know why. I have been eating NOTHING with gluten, or dairy, and cutting out all the triggery FODMAPs. But my stomach is so, so bloated and painful, awful stinking gas and really really constipated.

I just don't know what could be making this happen. I'm concerned maybe cross contamination is playing a part, but I'm worried that I'm making a mountain out of a molehill there, seeing as I haven't actually had a 'positive' celiac diagnosis. I can't be intolerant to everything - can I?

Please help - I just don't know what to do and it's really getting me down.

Thank you!

Lauren


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Thanksgiving was a little over a week ago. Did you have dinner at family or friends homes? If so I would suspect CC. Did you have the dinner at your home and cook gluten food for others? You could have been CC'd that way. Do you eat at restaurants much? You could have been CC'd there. Is there something you are eating more of than before you started the diet? For example I overloaded on soy after diagnosis not realizing that I am also intolerant to that. It is not unusual for us to have other intolerances particularly soy and dairy. Do you take any script meds? Generics can change binders and a med you took safely at your last refill may not be safe any longer. Generics need to be checked at each refill. Have you changed to a new lotion or shampoo or other personal care product? If so check the labels and make sure your toiletries are gluten free. Do you have a significant other who eats or drinks gluten foods? If so a kiss could have gotten you. It can be hard to figure out what got us. I hope your feeling better soon.

jststric Contributor

Yes, you could be intolerant of a number of things!! There are 8 COMMON allergens and then there's a unlimited amount of things you could be intolerant of on top of that. I kept a journal of everything that went in my mouth. I also had to determine the approximate amount of time it took for something to "affect" me. Everyone is very different. This is about you, not others. Personally, I typically take 1 1/2-2 days for things to really show up on me. After I determined that glutens became a problem to add to my dairy intolerances, I was still having problems. Keeping the journal for months and months led me to find I am intolerant of not only glutens and dairy, but eggs, nuts, rice and beans. After isolating those items I FINALLY STARTED FEELING BETTER! But it took lots of time, frustration, depression, anger to finally find the light at the end of the tunnel. I have learned so much from this forum....its invaluable. I have also learned that my years of dairy intolerance EXPLODED into all the other things at a time when I had a very stressful/traumatic situation in my life. I thought I handled it pretty well, but apparently my body was taking it harder. It can often lay dormant in one's body until the stress triggers it. Unfortunately, it doesn't seem to have an "untriggering" button!! : ) I would encourage you to give yourself time and journal, journal, journal and then start analyzing to see what patterns you find.

Takala Enthusiast

The FODMAP diet for IBS is so restrictive, I suspect it is for people, some of whom I suspect just need to cut out GLUTEN proteins from wheat, rye, barley, and get their guts healed, and then they would be able to eat some or a lot of the other things on it.

Two of the biggest culprits that go along with celiac/gluten intolerance are lactose, milk sugar, or lactose and casein, the milk protein, and soy. Since it sounds like you are avoiding dairy, that leaves soy, but it could be anything else. Even such things as common gluten free substitutes such as corn, potato, tapioca, flax....

I have had some cross contamination problems this year, first when my husband cooked dinner, and every time I reacted, and we traced it back to a powdered granulated garlic imported from China (McCormick's brand too, which is supposed to be safe, boy, was I annoyed. tried cooking with fresh garlic again and NO REACTION, so threw it out), and then to a certain batch of hemp milk, which may have been safe before but could have been cross contaminated somehow because I was just miserable every time I ingested it. This is why I only use water for liquid when I bake, because otherwise these gluten-free nut milks with the hidden barley enzymes from the #$%^&#$%^& processing or sweetener have the potential to ruin large batches.

Fermentable Oligo Di Mono saccharides And Polyols, short chain carbs that are osmotic and fermentable.

Supposedly one eats nothing out of these and then after 6 weeks re introduces some, one by one, for a challenge to see whether or not they are a problem. You can see what happens if a dietician tells you to reintroduce wheat, for example, it will screw up everything else.

If you are eating large quantities of "something else" to make up for all the other food you are not, you are likely either getting cross contaminated or you are ingesting something else you have an intolerance to, in large quantities. Aren't the holidays fun ? :blink:<_<

These tests supposedly came back weak positive, and your parent says you were gluten and lactose intolerant as a child ?

You can't be just a little bit pregnant nor just be a little bit gluten intolerant.

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. - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    2. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    4. - AutomatedGlutenEjector commented on Scott Adams's article in Latest Research
      71

      COVID-19 a Possible Trigger for Celiac Disease in Those with Genetic Risk

    5. - akebog posted a topic in Gluten-Free Restaurants
      0

      Fusilli Pizzeria, Miller Place, NY

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

    • Total Members
      134,062
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
×
×
  • Create New...