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Condition worse than before

Nelly

By Nelly
in Coping with Celiac Disease

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Nelly Rookie
Nelly
Posted

Hi everyone, it's been 13 months now I am on gluten free diet . My stomach problems are less severe now and all my vitamin levels and hb has improved but I continue feeling fatigued and sometime zero energy level. I have developed new food allergies one which I am sure is peanuts. I am allergic to rice, soya , yeast , milk and corn 17 years back probably I had celiac by then which was diagnosed last year at the age of 44. I simply fail to understand prior to diAgnosis I was not as lethargic and fatigued as I am now without exerting myself . I was a working lady at that time but as I have left my job I feel terrible. Although I had my stomach issues and every year I used to get iron injections because of my low hb level but I used to manage all my chores but now everyday is a nightmare for me. I am hypothyroid too but it's controlled. Sometimes I want to go back on gluten as i am fed up with this miserable feeling. I am lefty and my left thumb hurts so much that I cant even open a jar or do other simple tasks. Now I am not sure but I think I am developing some other food allergy probably eggs are causing it but it will take a few days for me to be sure of it. Please help as I am taking all the supplements doing light exercise in the gym but I feel hopeless. Taking antidepressants too but it's not helping.

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notme Experienced
notme
Posted

eggs are not my friend.   unless they're in something baked (ikr ???)  i can't digest ANYTHING if i've eaten an egg.  somebody told me duck eggs might be ok, but i don't know any ducks <i quack myself up :D )  i was busy giving up multiple other foods, when the innocent looking (and perfect protein, as i am underweight, so always trying to pack on the protein) egg is causing all the trouble.  i even had salad (gasp!) the other night and everything was a-ok!  i've had a hard time digesting raw veggies, but i was pleasantly surprised.  still have issues with soy, but i avoid most processed foods.  that seems to do the trick with soy :)  good luck - i hope you find your answers!!

cyclinglady Grand Master
cyclinglady
Posted

Nelly,

It has been about a year since your diagnosis.  You originally stated that your TTG level was about 300 (no endoscopy was done).  Have you had follow-up testing to see if your TTG levels have dropped to normal?  Maybe you need more time?  Maybe you have another autoimmune disorder?  

I think a visit to your doctor for testing is needed.  Frankly, the standard of care for celiac disease includes annual testing:

Open Original Shared Link 

Please rule out celiac disease as the cause of your worsening symptoms.  

I hope you feel better soon!  

 

flowerqueen Community Regular
flowerqueen
Posted

Hi Nelly, 

I have to agree with Cycling Lady, you need a follow up, to see how you are healing. Most people that have had an endoscopy to get a diagnosis get a follow up one about a year later. I notice you didn't get one. If you have had coeliac disease for a long time, it is going to take longer for your health to be restored. I also think it's possible that you could have another auto-immune disease;  with coeliac disease, (which is itself an auto-immune disease) there is an increased chance of you developing another. 

Maybe for the time being, you could stop visiting the gym, you need all your energy reserves for getting better, you need to be kind to yourself. It's good you are taking supplements (have you double checked that they are totally gluten free?)

You are certainly not alone in developing other food intolerances, I for one have developed food intolerances since my diagnosis, including soy and now possibly xantham gum, which seems to be in a lot of gluten free foods, as it acts as a binder, to replace gluten. (Some of my food intolerances started before diagnosis, like dairy, for example).

Keep a food diary, write everything down you eat and drink and any symptoms you experience afterwards, but do go back to your doctor for further investigation. Take care and hope you feel better soon.

GFinDC Veteran
GFinDC
Posted

Hi Nelly,

I agree with the previous posters.  Something else you can try is an elimination diet.  Nightshades may by a cause of joint pain.  You could stop eating them for a couple months to see if there is an improvement.

Nelly Rookie
Nelly
Posted
  • Author

Thanks everyone for your help and suggestions. I have a question why is it that I developed some new allergies after a year of going  gluten free . Any ideas??

SLLRunner Enthusiast
SLLRunner
Posted

Nelly,

I agree with the previous posters.  Please make that doctor's appointment today. 

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cyclinglady Grand Master
cyclinglady
Posted
16 minutes ago, Nelly said:

Thanks everyone for your help and suggestions. I have a question why is it that I developed some new allergies after a year of going  gluten free . Any ideas??

Yeah, you could be still getting gluten into your diet and your celiac disease may still be active, thus contributing to your "allergies" or food intolerances.  That's why we have recommended follow-up celiac testing.  The celiac blood panel can help you determine if you are diet compliant.  Ask for the entire panel -- not just the TTG.  

GFinDC Veteran
GFinDC
Posted

Hi Nelly,

Do you know why you are hypothyroid?  Some people with celiac disease also have Hashimoto's thyroiditis, which is an auto-immune attack on  the thyroid.  They can test you for Hashimoto's thyroid antibodies.

Celiac disease irritates/damages the lining of the small intestine.  Food protein particles may get in the blood stream and that leads to a reaction by the immune system.  Over time an intolerance may develop.

It also may be that your food reactions are temporary and will fade away after a while.  They probably aren't really food allergies, but are most likely food intolerances instead.  Intolerances are a different immune reaction from allergies.  Allergies can be managed with anti-histamines, food intolerances can't.  Allergies can also be life-threatening in some cases due to the IgE reaction closing the airway.

Just some more info, hopefully it will help.

frieze Community Regular
frieze
Posted

? menopause?

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