Please help is it celiac or not ?

[ElenaM]

Please help, 

I am 30.All my life from childhood I had upset stomach pain and cramps.As a child was frequently treated for giardia and still had cramps.As a child so strange I had bumps with water on skin.Not redness nothing else.Just bumps filled with water all over my body.Later I never had these.But in my early teens I started with fatigue anxiety.Then extreme fatigue.Hair fallen.Eyebrow loss over a few years to nonexistent eyebrow.Always low iron even with supplementing.Low vitamin D3.Low calcium and magnesium.Gastrointestinal for a few months now I have cramps daily.Diarheea almost daily.Treated for parasites and giradia.nothing changed.

OTHER symptoms.  Bone pain.Spinal pain.Headache.Eye floaters.Done MRI and eye exams nothing all clear

Low iron again at blood work.

Low exercise tolerance.

So bloated I seem like pregnant in 9 months even !!!if i lost weight the last three months

Itchiness all over body but no bumps just redness

Itchiness extreme on the scalp.

Petechiae small red spots all over my body this is for years now.

Tried gluten free even though in my country very hard to keep up with this.

Only for few days then gave up and tried again and so on.

Did some blood work but only 2 antobodies and not IGa and Igg judt one of them.Negative.this was two years ago.

I don't know what to do.

Oh and mouth ulcers.

And have gas i am afraid because i can hardly control because i am extremely bloated.

I am desperate.

Thanks.

 

[ravenwoodglass]

Welcome. You do sound like you could be one of us.  You should get retested for celiac. Just because tests were negative a couple years ago doesn't mean they will be now.  Any doctor can run the panel but if you can see a GI doctor that  is familiar with celiac that might be best. Do not stop eating gluten until your celiac related testing is finished.

[Ennis-TX]

1 hour ago, ElenaM said:

Please help, 

I am 30.All my life from childhood I had upset stomach pain and cramps.As a child was frequently treated for giardia and still had cramps.As a child so strange I had bumps with water on skin.Not redness nothing else.Just bumps filled with water all over my body.Later I never had these.But in my early teens I started with fatigue anxiety.Then extreme fatigue.Hair fallen.Eyebrow loss over a few years to nonexistent eyebrow.Always low iron even with supplementing.Low vitamin D3.Low calcium and magnesium.Gastrointestinal for a few months now I have cramps daily.Diarheea almost daily.Treated for parasites and giradia.nothing changed.

OTHER symptoms.  Bone pain.Spinal pain.Headache.Eye floaters.Done MRI and eye exams nothing all clear

Low iron again at blood work.

Low exercise tolerance.

So bloated I seem like pregnant in 9 months even !!!if i lost weight the last three months

Itchiness all over body but no bumps just redness

Itchiness extreme on the scalp.

Petechiae small red spots all over my body this is for years now.

Tried gluten free even though in my country very hard to keep up with this.

Only for few days then gave up and tried again and so on.

Did some blood work but only 2 antobodies and not IGa and Igg judt one of them.Negative.this was two years ago.

I don't know what to do.

Oh and mouth ulcers.

And have gas i am afraid because i can hardly control because i am extremely bloated.

I am desperate.

Thanks.

 

You might want to see about getting the blood test done again and getting a full celiac panel. You have to be consuming gluten daily for 12 weeks before the test. At least half a slice of bread a day. And keep eating gluten til you get the endoscope. The endoscope with biopsy is the golden standard as some people do not show up on the blood test.

You mentioned itchiness and redness, look up DH and tell me if it looks like. If you have DH then you HAVE celiac. They test it by taking a skin biopsy from a clear spot next to one of the lesions and testing it.

I have seen some others with this disease distend where they look pregnant when they get glutened. I have some distention but never that bad, just a obvious bump that pressing out. 

[CherHof]

Sadly, I have had very similar symptoms, however have been testing for Celiac in my 20s, 30s, and now my 40s, always negative.  
Is it possible to have Celiac but not get a positive test result while eating gluten products?

I am now following a low FODMAP diet and it is helping my symptoms, but just finding out about maltodextrin being a culprit for continued flare ups.

I have had a coloscopy after being on FODMAP for 2 months, so resultant biopsy was negative for Celiac.  

I was hoping to have gotten a diagnosis to explain all the classic symptoms since I was born, but without answers and feeling better, I am just avoiding trigger foods.

I have recently had to remove all dairy and corn from my diet as well.

Has anyone else had this issue?

[Ennis-TX]

14 minutes ago, CherHof said:

Sadly, I have had very similar symptoms, however have been testing for Celiac in my 20s, 30s, and now my 40s, always negative.  
Is it possible to have Celiac but not get a positive test result while eating gluten products?

I am now following a low FODMAP diet and it is helping my symptoms, but just finding out about maltodextrin being a culprit for continued flare ups.

I have had a coloscopy after being on FODMAP for 2 months, so resultant biopsy was negative for Celiac.  

I was hoping to have gotten a diagnosis to explain all the classic symptoms since I was born, but without answers and feeling better, I am just avoiding trigger foods.

I have recently had to remove all dairy and corn from my diet as well.

Has anyone else had this issue?

Some members here tested negative on the blood test always. The biopsys are taken of the small intestines via a endoscope, not a colonoscoy. And even then the small intestines have the surface area of a tennis court.....they can miss it only taking small samples.

I became allergic to corn a few years after diagnosis, diary is a common issue, with lactose intolerance as your villi which produce the enzymes to break down dairy are destroyed (some regain the ablity to eat it with healing some do not). I myself also got a whey allergy so I am in the same boat with you there. But not to worry, I buy dairy free cheeses, milks, and grain free foods making breads myself, you can buy, grain free breads, cookies, pizza crust, etc if you get those tempting cravings. But for now try to stick to a whole foods diet til you feel better.

I hear you on the maltodextrin...I had to call so many companies, often they use corn..sometimes rice or tapioca. Citric acid is another issue with corn and modified food starch. You have to call companies to get the sources, and call regardless if unsure....I recently got some non dairy cheese sauce that said it had a bit of potato starch in it and no corn....I had a allergic reaction to it and called and they said they used either corn or potato

PS corn can bit in a bit of everything, carmal color, baking powder, modified foods starch, citric acid, malic acid. I have to check everything, found the stuff in drinks, flavor additives, baked goods, powdered mixes, seasonings, sauces...OH here is a funny one...the GENERIC Zyrtec had it...I was allergic to my allergy medicine lol. Careful of anything processed and then some....YOU will find some wax coatings on fruits and veggies are made with corn deprived products...or corn based powder used as a anti clumping agent or coating on stuff....corn will drive you mad but you can do it with certain precautions and avoiding potential hazards.

 

[CherHof]

9 minutes ago, Ennis_TX said:

Some members here tested negative on the blood test always. The biopsys are taken of the small intestines via a endoscope, not a colonoscoy. And even then the small intestines have the surface area of a tennis court.....they can miss it only taking small samples.

I became allergic to corn a few years after diagnosis, diary is a common issue, with lactose intolerance as your villi which produce the enzymes to break down dairy are destroyed (some regain the ablity to eat it with healing some do not). I myself also got a whey allergy so I am in the same boat with you there. But not to worry, I buy dairy free cheeses, milks, and grain free foods making breads myself, you can buy, grain free breads, cookies, pizza crust, etc if you get those tempting cravings. But for now try to stick to a whole foods diet til you feel better.

I hear you on the maltodextrin...I had to call so many companies, often they use corn..sometimes rice or tapioca. Citric acid is another issue with corn and modified food starch. You have to call companies to get the sources, and call regardless if unsure....I recently got some non dairy cheese sauce that said it had a bit of potato starch in it and no corn....I had a allergic reaction to it and called and they said they used either corn or potato

 

@Ennis_TX

Thank you for the information you offered.  I am sorry you have this issue too!  I have been gluten-free for two years, and have been losing weight steadily, vs gaining 50 lbs a year!

I just had an instant cappuccino, contains maltodextrin, and am now itchy and my head is fuzzy.  That's the worst way to know something contains gluten!

I am so happy for alternative cheeses.  Daiya makes a nice one that melts like real cheese!  I have also signed up for Brandless, which sells so many gluten-free items, as does Aldi's!  I am just going to stay on this diet the rest of my life, if possible, and be healthy and happy!

[Ennis-TX]

1 minute ago, CherHof said:

@Ennis_TX

Thank you for the information you offered.  I am sorry you have this issue too!  I have been gluten-free for two years, and have been losing weight steadily, vs gaining 50 lbs a year!

I just had an instant cappuccino, contains maltodextrin, and am now itchy and my head is fuzzy.  That's the worst way to know something contains gluten!

I am so happy for alternative cheeses.  Daiya makes a nice one that melts like real cheese!  I have also signed up for Brandless, which sells so many gluten-free items, as does Aldi's!  I am just going to stay on this diet the rest of my life, if possible, and be healthy and happy!

Daiya contains corn, the citric acid and xantham gum from it is made from corn, the processed nature for me make it a delayed reaction. Miyoko Creamery, Leaf Cusines, Lisanattis are corn, gluten, lactose, and whey free. SOME kite hill are also corn free but stay away from the ones with xantham gum, they grow the black mold stuff on corn.

[Posterboy]

1 hour ago, CherHof said:

Sadly, I have had very similar symptoms, however have been testing for Celiac in my 20s, 30s, and now my 40s, always negative.  
Is it possible to have Celiac but not get a positive test result while eating gluten products?

I am now following a low FODMAP diet and it is helping my symptoms, but just finding out about maltodextrin being a culprit for continued flare ups.

I have had a coloscopy after being on FODMAP for 2 months, so resultant biopsy was negative for Celiac.  

I was hoping to have gotten a diagnosis to explain all the classic symptoms since I was born, but without answers and feeling better, I am just avoiding trigger foods.

I have recently had to remove all dairy and corn from my diet as well.

Has anyone else had this issue?

Cherhof,

Ennis_tx has given you good information as he always does.

I also had trouble with Corn ....if corn is also bothering you need to research more about Pellagra. Here is an article about it.

https://www.celiac.com/celiac-disease/journal-of-gluten-sensitivity/journal-of-gluten-sensitivity-winter-2017-issue/a-differential-diagnosis-how-pellagra-can-be-confused-with-celiac-disease-r3989/

as long as you eat a lot of protein in your diet . .. you probably wont' test low in Niacin because we can synthesize Niacinamide from protein in our diet.

taking Niacinamide 2/day for 2 to 3 months can help your corn allergy .....if Pellagra has developed from your flattened villi caused first by primary Celiac and the resulting poor absorption. ... has caused you to be low in Niacinamide.

see this research how Celiac's get low in B-Vitamins.

https://onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2036.2002.01283.x?inf_contact_key=ea0f2a766da007cd64921c490e0f3144800b47a6bffe30d3db72e448ff52727e&

I hope it is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,