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I May Possibly Have Celiac Disease

Aquina1300

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Aquina1300 Rookie
Aquina1300
Posted

Hello Everyone!

In February, my mother and I went from Minnesota to Washington DC to visit my sister and her family. :) We stayed for 10 days. The third day we were there, my sister received confirmation from the doctor that her 15 month old son has celiac disease. :( I felt sorry for him but honestly I didn't think much about it.

This morning my mother called me and told me to get tested because she thinks I have it too. :o She thinks this because I get hives alot, I am always tired and have had three miscarriages (I have never carried a pregnancy to term. My husband and I have been trying to find out what's wrong for the last few years).

I made an appointment for April 4 with the local clinic. What do I need to ask the doctor and what do I say to the doctor. Frankly, I don't think I have celiac disease but I am worried that if I do have it, the doctor would miss the diagnosis.

If I have celiac disease, it's going to be a problem. I bake bread for a living and I like my job. :huh:

I am a little worried about this. Should I be worried???

Thanks,

Aquina

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Carriefaith Enthusiast
Carriefaith
Posted

Celiac disease is genetic and you don't even need to have symptoms in order to have villi damage in the small intestine. Since you do have some symptoms and have a nephew with celiac disease, then getting tested for celiac disease would be a good idea. Here is a list of blood tests to ask for:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You can also get a biopsy of the small intestine to see if there is damage to the villi and there is a gene test to see if you have a celiac gene.

Also, don't go gluten-free until after the testing is all done, since eating gluten-free can give false negative results on blood tests and biopsies.

Good luck with your appointment and keep us posted!

brenp Newbie
brenp
Posted
Hello Everyone!

In February, my mother and I went from Minnesota to Washington DC to visit my sister and her family. :) We stayed for 10 days. The third day we were there, my sister received confirmation from the doctor that her 15 month old son has celiac disease. :( I felt sorry for him but honestly I didn't think much about it.

This morning my mother called me and told me to get tested because she thinks I have it too. :o She thinks this because I get hives alot, I am always tired and have had three miscarriages (I have never carried a pregnancy to term. My husband and I have been trying to find out what's wrong for the last few years).

I made an appointment for April 4 with the local clinic. What do I need to ask the doctor and what do I say to the doctor. Frankly, I don't think I have celiac disease but I am worried that if I do have it, the doctor would miss the diagnosis.

If I have celiac disease, it's going to be a problem. I bake bread for a living and I like my job. :huh:

I am a little worried about this. Should I be worried???

Thanks,

Aquina

I'd get tested if I were you. Before I was diagnosed, I worked in a bakery and I was sick!! Flour is also an inhaled irritant for celiacs, big problems. Not only are you eating it daily, but you are inhaling it at work. For your own sake, get tested right away.

BrenP

jerseyangel Proficient
jerseyangel
Posted

Hi Aquina--welcome! Please don't be worried. It is true that Celiac is genetic, so if your little nephew has been diagnosed, others in the family have an increased chance of having it. When you go into the doctor, tell him/her that you want the complete Celiac blood panel run. Of course you will let him know about your nephew and your miscarriages (this is also one of the many symptoms of Celiac). Your fatigue could stem from anemia--have you been tested for that? Anemia is another symptom--and a common one. Hopefully, your doctor will be up to date on his Celiac knowledge--some (even GI specialists) aren't. It is important that you continue to consume gluten before you have any testing done. The result could come back a false negative if you cut it out beforehand. Good luck with your appt--be sure to let us know how you did, and don't hesitate to come and ask questions anytime :)

Aquina1300 Rookie
Aquina1300
Posted
  • Author

Hello Carriefaith, BrenP and JerseyAngel!

Carriefaith, Thank you so much for listing exactly what I need to ask for. That way I will be sure of any results the test comes back with. :) Also I assume that you moved my question to the proper forum. Thanks, I didn't notice this one earlier.

BrenP, yeah, I'm a bit worried about how celiac disease would work with baking bread. :huh: I bake around 2,000 loaves a day and all different kinds of breads. If I do have celiac disease, and if it inhaling flour and other ingredients is a problem, I would have a big problem. I really hope I don't have celiac disease because I really love my job and I eat fresh baked bread all day long. I don't know that I have it yet and I'm going to wait until all tests and all avenues are exhausted before I give up my job.

Jerseyangel, I have been diagnosed with temporary anemia twice. Both times it was after a miscarriage so it may be due to the miscarriage rather than celiac disease.

Everyone, I don't know if I have it or don't have it yet. My mother seems convinced that I do have it. Anyways, even if I don't have it, I would like to remain a member of this forum so I will know what my nephew can eat when I see him. :D

jerseyangel Proficient
jerseyangel
Posted
Everyone, I don't know if I have it or don't have it yet. My mother seems convinced that I do have it. Anyways, even if I don't have it, I would like to remain a member of this forum so I will know what my nephew can eat when I see him. :D

Either way, you're welcome here anytime! :D

Carriefaith Enthusiast
Carriefaith
Posted

I'm glad I could help!

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mommida Enthusiast
mommida
Posted

You are always welcome. We will be sure to let you know about safe yummy things for your nephew to eat.

I understand a celiac disease diagnoses right now would be life changing, but it would save you from a lot of future problems. You could be one of the lucky ones who can be diagnosed without suffering symptoms for 11 years before diagnoses. (That is the average, 11 years in the US.)

Laura

gabby Enthusiast
gabby
Posted

Don't think you have to give up baking bread for a living if you test positive. You just will have to avoid baking bread with wheat/barley/rye/oat flours. But there are many other flours out there....and there are soooo many people looking for good non-gluten bread. You could end up being somebody who comes up with a few great Gluten-free bread recipes and makes life better for thousand and thousands of people out there.

Celiacs aren't the only ones going gluten-free. Many many autistic children are going gluten & casein free. Lots of people with automimmune disorders like lupus, multiple sclerosis, arthritis, diabetes, etc. are going gluten-free. and they're all looking for some good bread.

And the food manufacturers and grocery chains are waking up to this too....they're always looking for new and better gluten-free bread recipes.

So it could end up being a silver lining....

eleep Enthusiast
eleep
Posted
BrenP, yeah, I'm a bit worried about how celiac disease would work with baking bread. :huh: I bake around 2,000 loaves a day and all different kinds of breads. If I do have celiac disease, and if it inhaling flour and other ingredients is a problem, I would have a big problem.

Hey -- there's a giant growing market for gluten-free baked goods -- if you do artisanal baking, this could be the start of a fabulous new career path as well!

Whoops -- missed that last post -- well, I'm adding to the encouragement -- I, for one, would love to see more breads and mixes out there competing with the Breads by Anna -- which is the closest I've had to a good whole-grain bread, but I'd still like to see a gluten-free version of a pain au levain -- and, while I'm thrilled that there are gluten-free pate-au-choux recipes, I'm really hoping someone eventually comes up with a good gluten-free puff pastry dough.

Aquina1300 Rookie
Aquina1300
Posted
  • Author

Hello JerseyAngel, Carriefaith, mommida (Laura), gabby and eleep:D

JerseyAngel and Carriefaith, I'm glad you two posted earlier. Thanks :D

mommida, I hope to find some yummy treats I can make for the nephew (he's the fifteen month old who was diagnosed with celiac disease). :( Yesterday, I talked to my sister and she is having her daughter checked for celiac disease as well. Even if her daughter doesn't have it, it's nice to know if her daughter has the gene. I spoil all my nieces and nephews, but this little nephew is going to be a particular challenge . I like a challenge so I may go overboard:D

I don't think I have celiac disease but my mother and sister seem to think so and it's better to be safe than sorry. Eleven years after developing symptoms would be a long time to be in pain. I go in for my first appointment concerning this on April 4. I just picked a doctor at random so I don't even know if the doctor will know anything about celiac disease. I am a little worried though.

gabby, it's amazing but you're right. gluten free bread is an undersupplied market. I don't know much about non-traditional gluten free baking so I would have to learn alot to open up a new store.

eleep, puff pastries, now you're talking :lol: Are there currently any puff pastries that are gluten free? That would be a hard one to pull off, I think. But looking at the market available, it would be worth it.

monicaleestudios Newbie
monicaleestudios
Posted

Hi! This is my first post and I have a question. I have been in and out of symptoms for quite some time but of course was diagnoised with IBS. Over the last few months my symptoms have been out of control and yesterday I ended up in the ER and the ER doctor did some blood work that may have indicated I may have celiac disease. I had already made an appt. to be tested 9set for late May) but I was really surprised when and ER doc concluded this. Anyway, my appointment is on Monday and frankly, I am alittle sfraid to eat anything! It is Sat, if I eat gluten free foods just for a couple days will it affect my results? I have been eating a gluten diet and keeping a food journal up until this point but didn't see any consistancy then a friend of mine who has cleiac said his symptoms where inconsistent too. I read what was posted before about what tests to run. I am going to a new GI, shouold I bring that list incase he is not familiar with the tests? I know a doctor in his practice is, he treats my friend. My little trip to the emergency room got my appt. moved up ;)

Your posts are encouraging, I am a little overwhelmed.

mouse Enthusiast
mouse
Posted

Keep eating gluten until you are done with all of the testing. Take the testing list with you, just in case he is not familiar with all that should be done. It is better to be safe then waste an appointment. If he does not want to run the whole panel, ask that it be run, so that you may have peace of mind. He can not fault you that you just want "peace of mind". I hope your appointment goes well and that you find the answers you need.

Nancym Enthusiast
Nancym
Posted
Hi! This is my first post and I have a question. I have been in and out of symptoms for quite some time but of course was diagnoised with IBS. Over the last few months my symptoms have been out of control and yesterday I ended up in the ER and the ER doctor did some blood work that may have indicated I may have celiac disease. I had already made an appt. to be tested 9set for late May) but I was really surprised when and ER doc concluded this. Anyway, my appointment is on Monday and frankly, I am alittle sfraid to eat anything! It is Sat, if I eat gluten free foods just for a couple days will it affect my results? I have been eating a gluten diet and keeping a food journal up until this point but didn't see any consistancy then a friend of mine who has cleiac said his symptoms where inconsistent too. I read what was posted before about what tests to run. I am going to a new GI, shouold I bring that list incase he is not familiar with the tests? I know a doctor in his practice is, he treats my friend. My little trip to the emergency room got my appt. moved up ;)

Your posts are encouraging, I am a little overwhelmed.

If you're doing the testing keep eating gluten. Not eating gluten will skew the results so you might get a false negative.

Some of us opt out of all the testing and just try a gluten-free diet. My doctors accepted the results of that as proof that I am sensitive to gluten.

monicaleestudios Newbie
monicaleestudios
Posted
If you're doing the testing keep eating gluten. Not eating gluten will skew the results so you might get a false negative.

Some of us opt out of all the testing and just try a gluten-free diet. My doctors accepted the results of that as proof that I am sensitive to gluten.

Thanks for your responses. Luckliy, the appointment is soon. (Monday)

Aquina1300 Rookie
Aquina1300
Posted
  • Author

Hello Everyone!

monicaleestudios, I hope everything goes well with your testing on Monday. :) I have an initial appointment with a doctor on Tuesday. I have also been a little afraid to eat any gluten and I've been dreading going to work. The prospect of changing a lifestyle is scary. :unsure:

Also, and I don't know a whole lot about celiac disease but my nephew's blood test came back negative initially in January. The doctor did a biopsy that confirmed celiac disease, so you might want to insist on having the biopsy if the blood test comes back negative. But, like I said, I am new to all this and I am going on what my sister told me. I am not trying to worry you any more than you are already but you may want to discuss the biopsy with the doctor as well.

Goodluck, monicaleestudios

monicaleestudios Newbie
monicaleestudios
Posted
Hello Everyone!

monicaleestudios, I hope everything goes well with your testing on Monday. :) I have an initial appointment with a doctor on Tuesday. I have also been a little afraid to eat any gluten and I've been dreading going to work. The prospect of changing a lifestyle is scary. :unsure:

Also, and I don't know a whole lot about celiac disease but my nephew's blood test came back negative initially in January. The doctor did a biopsy that confirmed celiac disease, so you might want to insist on having the biopsy if the blood test comes back negative. But, like I said, I am new to all this and I am going on what my sister told me. I am not trying to worry you any more than you are already but you may want to discuss the biopsy with the doctor as well.

Goodluck, monicaleestudios

Good Luck to you too! I got a bit bummed yesterday but today I pulled myself up by the boot straps and told myslef that it may be a real blessing to finally figured why I feel so bad after I eat! I just want some energy and relief. The doctor told me my body was not absorbing protein...keep me posted onyour results too!

TCA Contributor
TCA
Posted

Welcome! I just wanted to let you know about a friend of mine. As I was reading over the symptoms of Celiac when we started learning my son might have it, I thought of a friend of mine who had had 3 miscarriages and lots of female issues. I called her mom and she told her about it. She decided to just try the diet and see what happened. She had the first period she had had in 3 years without it being medically induced in less than a week. She's now decided to go back on gluten and get tested. In Europe when women have infertility issues, celiac disease is the first thing they test for. I just wanted to let you know. Sometimes the symptoms aren't so obvious. I'll be thinking of you. Good luck and let me know when you come out with your puff patries!!! :P

Hello Everyone!

In February, my mother and I went from Minnesota to Washington DC to visit my sister and her family. :) We stayed for 10 days. The third day we were there, my sister received confirmation from the doctor that her 15 month old son has celiac disease. :( I felt sorry for him but honestly I didn't think much about it.

This morning my mother called me and told me to get tested because she thinks I have it too. :o She thinks this because I get hives alot, I am always tired and have had three miscarriages (I have never carried a pregnancy to term. My husband and I have been trying to find out what's wrong for the last few years).

I made an appointment for April 4 with the local clinic. What do I need to ask the doctor and what do I say to the doctor. Frankly, I don't think I have celiac disease but I am worried that if I do have it, the doctor would miss the diagnosis.

If I have celiac disease, it's going to be a problem. I bake bread for a living and I like my job. :huh:

I am a little worried about this. Should I be worried???

Thanks,

Aquina

Aquina1300 Rookie
Aquina1300
Posted
  • Author

Hello Everyone! :D

Monicaleestudios, I'm glad you're not letting your concerns worry you too much. :) I've been fairly successful at ignoring the whole thing. If I have it, I'll make some changes. If I don't, I'll know for sure and at the very least, I'll be a lot more understanding to those who do have celiac disease including my darling little nephew. :) I just want to let you know, you have been in prayers. :rolleyes: (Rolling eyes heavenward) I really want to know how your appointment went today and how you feel about everything.

TCA, The puff pastries may be a little ways off. There's a lot more experimenting I'll have to do before I can find a recipe that's up to snuff. I hope I can "discover" one. It'll be a tricky thing though. :) On another note, I haven't been able to find anything much relating woman problems to celiac disease :( but I know there's some information out there. I'm surprised that Doctors in Europe test for celiac disease as a routine matter for infertility. :o In one sense, if I do have celiac disease, it gives me hope that I will be able to carry a pregnancy to term. In another sense, if I don't have celiac disease, it puts me back at the "I-Know-There's-Something-Wrong-But-I-Don't-Know-What's-Wrong" stage regarding the infertility.

TCA and Monicaleestudios, In some sense I want to know what's wrong and fix it, in another sense, I'm concerned about all the lifestyle changes that go along with celiac disease, especially my job. :unsure: I'm really hoping I don't have it. Thank you both for your understanding.

Everyone, This message board is really a great way sound off about concerns without bothering family or friends. :) I really don't want to get anyone else involved until I know for sure. Interestingly, this is the most thoughtful, caring and civilized messageboard I have ever participated in :D

monicaleestudios Newbie
monicaleestudios
Posted
Hello Everyone! :D

Monicaleestudios, I'm glad you're not letting your concerns worry you too much. :) I've been fairly successful at ignoring the whole thing. If I have it, I'll make some changes. If I don't, I'll know for sure and at the very least, I'll be a lot more understanding to those who do have celiac disease including my darling little nephew. :) I just want to let you know, you have been in prayers. :rolleyes: (Rolling eyes heavenward) I really want to know how your appointment went today and how you feel about everything.

TCA, The puff pastries may be a little ways off. There's a lot more experimenting I'll have to do before I can find a recipe that's up to snuff. I hope I can "discover" one. It'll be a tricky thing though. :) On another note, I haven't been able to find anything much relating woman problems to celiac disease :( but I know there's some information out there. I'm surprised that Doctors in Europe test for celiac disease as a routine matter for infertility. :o In one sense, if I do have celiac disease, it gives me hope that I will be able to carry a pregnancy to term. In another sense, if I don't have celiac disease, it puts me back at the "I-Know-There's-Something-Wrong-But-I-Don't-Know-What's-Wrong" stage regarding the infertility.

TCA and Monicaleestudios, In some sense I want to know what's wrong and fix it, in another sense, I'm concerned about all the lifestyle changes that go along with celiac disease, especially my job. :unsure: I'm really hoping I don't have it. Thank you both for your understanding.

Everyone, This message board is really a great way sound off about concerns without bothering family or friends. :) I really don't want to get anyone else involved until I know for sure. Interestingly, this is the most thoughtful, caring and civilized messageboard I have ever participated in :D

Hello, Well, my GI appointment was yesterday and it was disappointing. I have learned by reading online that this iis often the case. My doctor gave celiac the "wave off" telling me my symptoms sounded like IBS. Fortunately, the Emergency room Doctor had already drawn blood and sent it off for testing. Otherwise, I may not have been able to convince my GI Doc to do the test. So now I wait 10 days. I have decided to go Gluten free while I wait. Probably out of fear that I will end up in the ER again.

Do you think this is wise? Another question, several years ago I did have an endoscopy and I don't know exactly what I tested for, am I awful of what? I do remember the GI doctor at the time say I was tested for allergies. IF I was tested in the endoscopy for Celiac could it have changed in 2-3 years?

Does it make sense what I am asking? A friend said that in the endoscopy they would have had to test 3 different places? Does anyone know how I can find out more about that test?

My friend also suggested that I get a copy of the blood test myself to make sure they are read correctly. I am trying to be more assertive and through this time. Sorry about the long post!

Aquina1300 Rookie
Aquina1300
Posted
  • Author

Hello Everyone! :D

I went to the Dr today and requested the full panel be tested. The Dr also decided to test for anemia, something to check the calcium and strangely, Lupus. She also suggested a test for endometriosis and fibroids. :blink:

Instead of telling my doctor my symtoms etc, I typed up everything. It took me three pages. The Doctor appreciated that. I'm thinking that from now on, I will do a typed explanation on all my Dr Visits. I feel far more comfortable with that and so did my Dr.

My Dr also confirmed that celiac is not as rare as once believed in the medical community.

The Dr said the results should be in by Friday. All I can do now is wait.

TCA and others, you'd be interested to know that the Dr immediately confirmed that many hospitals check for celiac disease of a matter of course with a patient who has infertility and/or a cycle of miscarriages. Thanks for the Info TCA, I would have never known to ask about it if you didn't share that with me :D

Monicaleestudios, if you feel that the GI is "waving you off" :angry: , maybe you should go to another GI. If you don't have a choice but to see this particular GI, maybe you should try another approach. Honestly, don't ever let anyone tell you its all in your head or make you feel like your problems aren't real. Your health is your responsibility and you have a right to seek medical attention.

However, I think I really like the Dr that was in the emergency room who sent off the blood to be tested. He sounds like he cares. Smart Dr :D

About the endoscopy you had done a few years back, I really don't know what to tell you. I haven't had one......yet. I don't think there's any harm in getting a copy of the endoscopy or your blood tests. A second opinion never hurt anyone and has often caught mistakes.

jerseyangel Proficient
jerseyangel
Posted

Wow--Your doctor sounds great--and thorough! Keep us posted on the results :)

floridanative Community Regular
floridanative
Posted

Both of you make sure to get copies of the actual test page from the lab. If you don't do this, you could easily be told you don't have Celiac, even if you have a weak positive result. If I didn't get my tests pages I would still be eating gluten today as I would have followed two docs suggestions that I do not have Celiac and therefore didn't need a biopsy. Luckily due to this board I did not stop until I had the biopsy - and as suspected I have full blown Celiac disease with several years of damage to my intestines. At least you know where to come to post your results if you don't trust your doctors to figure them out correctly. Good luck!

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      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Gluten tester

      By Scott Adams · Posted

      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
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