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Needing To Find Someone To Talk To.

Blessings

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Blessings Explorer
Blessings
Posted

I just found out in March that I have celiacs and in April that I have crohns. Emotionally I'm holding on by a thread. Anyone out there that's gone through this, on the south end of Co Springs, willing to lend an ear. I need an understanding friend right now.

I am going to a series of stress management classes

lots of prayer

appointment with therapist in June

workout at gym

don't know anyone else with celiac

went to CSA vendor fair last month will try to go to the meeting in June

Normally I am a very even keeled person but this has thrown me for a loop.

Vicky

buildingblessings@msn.com

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mammajamma Rookie
mammajamma
Posted

All I can tell you is... you are in the right place! I wish you luck dealing with all this...

AliB Enthusiast
AliB
Posted

You may undoubtedly find that dealing with the Celiac will also sort out the Crohn's, as it is almost certainly caused by the same thing. Gluten.

This is a great place to come and share experience, ask questions, vent and whatever you need. You can pretty much guarantee that what ever you are going through has been experienced in some form by others out there. We all support and encourage each other and it is a great help.

Even if you have no support or 'gluten-free compatriots' around you, there are loads of us here and you never know, you might just find a few local 'buddies' to pal up with through it too.

Bernadette Newbie
Bernadette
Posted

Celiac and Crohn's are completely linked and are often considered the "same" by many doctors- the reason why I say this is because my former co-workers tested negative for Celiac but was diagnosed with Crohn's disease and was told the treatment was a gluten free diet. One of my former doctor's thought I had Crohn's disease and told me to eat a gluten free diet and my new doctor strongly feels I have Celiac disease and has told me to eat a gluten free diet. I am currently awaiting the test results on the celiac disease. If you keep gluten out of your diet, both your Celiac and Crohn's disease will be managed appropriately. My doctor has even confirmed this as we spoke about this during my visit last week.

And, if you ever need to vent, just jump on this forum and let it out! My mother actually told me about this forum and I have learned so much and comforted to see that there are so many people that know how I feel.

Guest hightop girl
Guest hightop girl
Posted

I am in the colorado springs area, but at the north end of town. I don't have crohns, but I am new and can understand your need for some support. feel free to pm me so we can talk.

Sherry

ksymonds84 Enthusiast
ksymonds84
Posted
I just found out in March that I have celiacs and in April that I have crohns. Emotionally I'm holding on by a thread. Anyone out there that's gone through this, on the south end of Co Springs, willing to lend an ear. I need an understanding friend right now.

I am going to a series of stress management classes

lots of prayer

appointment with therapist in June

workout at gym

don't know anyone else with celiac

went to CSA vendor fair last month will try to go to the meeting in June

Normally I am a very even keeled person but this has thrown me for a loop.

Vicky

buildingblessings@msn.com

Hi Vicky,

I live in the south broadmoor bluff area. PM me anytime as well!

Chrissyb Enthusiast
Chrissyb
Posted

I live near the walmart on platte and only been dealing with celiac since november. I am hear to talk any time. I also have ms.

Chrissy

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ksymonds84 Enthusiast
ksymonds84
Posted

I was reading in wednesday's food section of the gazette that the pikes peak celiac organization is going to be meeting once a month at a different restaurant. My paper got thrown away but my husband THINKS he remembers June 16th at Gertrude's. You can call Gertrude's to see what info they have on how to reserve etc. if any of you colorado springs gals want to attend Sounds like a nice way to get to know fellow CDers.

  • 2 weeks later...
Blessings Explorer
Blessings
Posted
  • Author

Hi Guys

Have you heard anything else about Gertrudes? As far as I know the CSA Meeting is on Sat, June 14 at 10 am, at the Holly Branch Library. Platte and Murry, at the NE corner shopping center. I am going to go if you want to meet up and go to Chipotle afterwards. I sent you a personal message if you want to get back with me.

Hope to meet you guys.

sickchick Community Regular
sickchick
Posted

Hang in there Sweetie... we're all here for you. My heart is breaking for you.

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  • Posts

    • NanceK
      My only proof

      By NanceK · Posted

      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
      Is this celiac?

      By knitty kitty · Posted

      @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
      Fiber Supplement

      By Trish G · Posted

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    • trents
      Is this celiac?

      By trents · Posted

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    • 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.
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