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How long did it take for you to have no more bad days?

MOOO

By MOOO
in Coping with Celiac Disease

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MOOO Apprentice
MOOO
Posted

I have been gluten-free for around 8 months and over all I am improving, but I still have such a finicky tummy and digestive system. It seems as soon as I eat anything slightly out of the ordinary like a couple of potato chips or a gluten-free cookie I am terribly sick for a couple of days. Did you ever get to the point where you could eat anything except gluten and feel healthy? If so, how long did it take?

Thanks!

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Ennis-TX Grand Master
Ennis-TX
Posted

Nope...gut still dictates my life. It has things other then gluten it has issues with...this is the standard each person is different but with this disease you develop food intolerance issues and sensitivities. I know many that have issues with Xantham gum, we have a few members with issues to tomatoes and other nightshades. I think 2 members have issues with onions and garlic.
I can not eat Dairy, Soy, peanuts, certain spices, xantham gum, fructose, glucose, certain carbs, added food grade cellulose, and allergies to whey, corn, etc.
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Common problems are as mentioned dairy, soy, some have issues with peanuts/legumes. Break down to a whole foods only diet and keep a food diary, you might find certain ingredients in those "gluten free cookies" are bothering you like the gums, rice, sugar, dairy, etc. then you just find a version without them and use it as a treat.
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MOOO Apprentice
MOOO
Posted
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Ennis_TX

That sucks! Do these intolerances just keep cropping up? Or do things stabilize after you have been gluten-free a while?

I'm sure I have other intolerances but it is SO hard to figure out what they are.  I also feel like if I over do it on anything like eat a bag of cashews in one sitting I'm sick.  Does this sound normal for celiac?

ch88 Collaborator
ch88
Posted

I have lots of other food intolerance. I feel best if I avoid corn, soy, rice dairy and alcohol and other foods. I do not think my food in tolerances will go away.  It would be nice to eat whatever I wanted. I try to look on the positive side though which is that there are still lots of things I can eat and I feel really good and healthy.

gadamek Newbie
gadamek
Posted

My symptom's started 3 years ago and I was finally diagnosed last year and I have been on a gluten free diet since my diagnosis my recent blood work shows my Celiac is stable with the diet but still having symptoms that my primary , Hematologist or GI doctor can explain overall weakness , fatigue , joint pain , sleepless nights , itchy dry patches , achy like flu symptom's , headaches , SHB and bathroom issues. I had a Colonoscopy and Endoscopy last year when I had my diagnosis and was given a clean bill of health other than Celiac disease and now with a specialist that deals with celiac disease I had a CT scan with dye and they found two non-specific enlarged lymph nodes in my abdomen. Now have Colonoscopy and Endoscopy scheduled. I also had a iron insfusion because my Ferritin level was at 9 and its supposed to be 30 for males and 60 for females all my blood work has come back normal. Has anyone else had a difficult time getting better after their Celiac diagnosis? I was told I may have Crohn's or Lupus  or another Autoimmune disease. Just curious.   

Ennis-TX Grand Master
Ennis-TX
Posted
5 hours ago, gadamek said:

My symptom's started 3 years ago and I was finally diagnosed last year and I have been on a gluten free diet since my diagnosis my recent blood work shows my Celiac is stable with the diet but still having symptoms that my primary , Hematologist or GI doctor can explain overall weakness , fatigue , joint pain , sleepless nights , itchy dry patches , achy like flu symptom's , headaches , SHB and bathroom issues. I had a Colonoscopy and Endoscopy last year when I had my diagnosis and was given a clean bill of health other than Celiac disease and now with a specialist that deals with celiac disease I had a CT scan with dye and they found two non-specific enlarged lymph nodes in my abdomen. Now have Colonoscopy and Endoscopy scheduled. I also had a iron insfusion because my Ferritin level was at 9 and its supposed to be 30 for males and 60 for females all my blood work has come back normal. Has anyone else had a difficult time getting better after their Celiac diagnosis? I was told I may have Crohn's or Lupus  or another Autoimmune disease. Just curious.   

The other issues you mention sound like deficiency issues...common ones in fact for celiacs. Look up the the symptoms for B-vitamins, Magnesium, Vitamin D, etc. I use Liquid Health, Stress & Energy and Neurological Support 1 tbsp each 3 times a day as a full spectrum liquid B-vitmain blend, I use the D3 drops from the same company. I rotate my magnesium between Doctors Best and Natural Vitality Calm (calm requires special dosing).
I got diagnosed with UC a few years after celiac....the symptoms only started showing after a few years on the gluten free diet.

 

 

13 hours ago, MOOO said:

Ennis_TX

That sucks! Do these intolerances just keep cropping up? Or do things stabilize after you have been gluten-free a while?

I'm sure I have other intolerances but it is SO hard to figure out what they are.  I also feel like if I over do it on anything like eat a bag of cashews in one sitting I'm sick.  Does this sound normal for celiac?

Some do, after a gluten exposure I might get new ones...even a slight one from secondary contact. Others seem to roll in and roll out oddly. I have had a few that I had right have diagnosis that never came back, like pea protein, red #40  and I had one for the longest time to olives, are gone now. Others like peanuts, asuflame potassium or asuputame still mess with me.

gadamek Newbie
gadamek
Posted

funny thing is I have no deficiencies at all this is why the doctors are all stumped The GI doctor I see at the University of Penn said she thinks the Celiac Disease damaged my bone density and muscles to the point I may not regain my strength I had before I was diagnosed I went from playing football , softball , swimming a very active life at 44 to nearly no activity at 47 and currently I'm out of work on FMLA until the can figure out what is going on I drive a tractor trailer and with the weakness issue that makes it very difficult to do especially with the leg cramps like Charlie horses. These stupid skin rashes never want to heal an go away I'm hoping in the coming weeks the figure something out. I will try these out thank you for your input.

(I use Liquid Health, Stress & Energy and Neurological Support 1 tbsp each 3 times a day as a full spectrum liquid B-vitamin blend, I use the D3 drops from the same company.)

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