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Suffering from Celiac since birth, 25 now, married

Aakanksha

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Aakanksha Newbie
Aakanksha
Posted

Hi, 

This is Aakanksha , from India. I was diagnosed with Celiac disease when I was a child ( my mom says it is by birth). Now I am 25 years old and married here in India. I always have a bloated belly, people always mistake it with a good news. But No,  its my health condition and this tummy is not going in. 

 

Does anyone has any suggestion? Anyone else having similar issues? 

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kareng Grand Master
kareng
Posted
11 minutes ago, Aakanksha said:

Hi, 

This is Aakanksha , from India. I was diagnosed with Celiac disease when I was a child ( my mom says it is by birth). Now I am 25 years old and married here in India. I always have a bloated belly, people always mistake it with a good news. But No,  its my health condition and this tummy is not going in. 

 

Does anyone has any suggestion? Anyone else having similar issues? 

Are you eating gluten free? Maybe you are missing some gluten that you are eating?   If you are very gluten free, it wouldn't be from Celiac and you might want to see if there is another problem.

Aakanksha Newbie
Aakanksha
Posted
  • Author

Thanks for the reply Kareng... I try to have a complete gluten free diet but sometimes I tend to have gluten ( once in a while). My mother once said that this might b due to Malnutrition as I am not getting the exact nutrients in my diet ( she is a science teacher). 

Moreover , I am continuously gaining weight and not able to reduce, is it due to Celiac?

GFinDC Veteran
GFinDC
Posted

Hi Aakanksha,

To be healthy with celiac you need to stop eating all gluten.  Celiac disease is an autoimmune disease.  Autoimmune means our immune system attacks our body instead of attacking germs.  The immune system is very sensitive to gluten and germs.  In celiac disease, the immune system attacks (makes antibodies) to a protein found in wheat, rye, and barley.  That immune attack damages our small intestine.  Damage to the small intestine makes it hard to absorb vitamins and minerals.  The gut damage can also make it hard to digest dairy.

The immune attack (response) can continue for weeks or months.  So damage from eating gluten one day can last for months.  So for a celiac person to remain healthy we can never eat gluten.

Welcome to the forum! :)

deb-rn Contributor
deb-rn
Posted

You sound just like ME!  Only I'm 59 yrs old!  I gave up gluten over 3 yrs ago.  Had stomach issues... figured it out myself, then had the test.  It was negative.  Biopsy was offered, I declined.  I had already figured it out, I didn't need convincing!  I got better for a while.  Then I started feeling like I did before.  The bloat was visible AND uncomfortable!  I have continued to study Gluten Sensitivity and other autoimmune diseases.  I am positively diagnosed with Sjogrens disease, which goes with the gluten sensitivity quite often.  It is far more than dry eyes and skin, I can tell you from studying.  I also have pain that travels around my system... and if you take that to it's lowest level... just call it inflammation!  I have had symptoms of Rheumatoid Arthritis, by my blood tests have always been negative.  I've been watching online free seminars for a few years now about autoimmunity.  The most recent one called the Fat Summit hit home.  3 weeks ago my husband and I started following the AIP lifestyle.  Guess what?  My bloat started to decrease, my weight started to drop, inches fell off my midsection and my husband is now off his blood pressure meds, prescription NSAIDS, reflux medication, his prostate shrunk, blood pressure dropped, no more heartburn or breakthrough GERD symptoms.  It is truly like a miracle for us.  We are eating low carb, higher fat (good fats) and moderate protein.  He was a real carb-aholic!  After the first 3 days, he couldn't believe how the cravings disappeared!  I've heard it said... going gluten free can be good for you, but if you replace junk with gluten free junk, you're not doing much for your health.  I am a wonderful baker, if I do say so myself!  I could make gluten-free desserts that rivaled anything you've ever had!  Well, those days are over!  The high starch (carb) of most packaged gluten-free foods and all baked goods do you no favors!  We are eating more veggies than ever and loving our coconut fats!  I even rendered organic/grass fed pork fat!  I've read lots of books on the subject of the low fat craze, which was formally rejected, very quietly, last year by the US government.  They had used faulty research as the basis for the declaration over 30 yrs ago!  Our bodies are being bombarded with foods we can't assimilate causing Leaky Gut.  You can google that to learn more.  We are living proof of that!  I was so impressed with 3 of the online seminars that I bought them.  I am willing to share them if you are interested.  PM me with your email address.  I only wish I'd known this when I was  YOUR  age!  My weight has been an issue my whole life as it has my children.  We obviously were eating wrong for our genes!  I'm looking forward to the healthiest part of my life!  Last night I made beef veg soup and had 10 different veggies in there!  It just feels healthy to be eating food that nourishes my cells instead of stressing them out!  Amazing how some people just adapted better to the gluten, grains etc.  Some of us just suffered as the Industrial Revolution ran over us!

Debbie (recently retired Registered Nurse)

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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