Confused - Wheat Allergy/celiac/ibs?

[SLB5757]

Hello all:

This is really my last resort. I am so confused at this point that I do not know what to do anymore

My symptoms started about 3 years ago shortly after the birth of my son. I had about 4 weeks of diarreah and then it quit. After that I would start to get bloating and sharp left sided pain after eating. It is always high and under left ribcage. It feels as though it is a cramping or something is swelling up if that makes any sense at all. I can only say it comes on quick...and stops me with whatever I am doing. I have two little ones and am a single mom so it is difficult to not be able to a pain-free day.

I have had a gall bladder hida scan, a gastric emptying scan, and lots of bloodwork that was all fine. I had a negative celiac test ( one where my family doc just sent blood away to a lab then told me it was negative), and then had an endoscopy that showed mild inflamation probably due to acid reflux. I started on Nexium about a month ago. This does nothing for the sharp pain that will come on after eating. It's every meal except grilled chicken and plain unbuttered white rice I had allergy testing done and my allergist suggested omitting wheat because I showed an allergy to it as well as soy, corn, peanuts, and carrots (and many environmental allergies). He said to omit wheat for 6 mos. then try and introduce it once every 4 days. My regular doc said do not eliminate wheat and feels I have ibs. He said to INCREASE the fiber with whole grains and fruits and veggies.

I am so confused. When I eat Oatmeal or wheat bread or anything fiberous I about die. I start belching and bloating and get sharp pains. My wheat "allergy" was tested via a RAST test and registered a 3 on a scale of 0-5. The catgories said 0- negative...0/1, 1, 2, 3, 4 and 5 all positive. I'm not a 5 on wheat. and for soy, peanuts, corn, and carrots I was only a 3. Cultivated wheat pollen and cultivated corn pollen as well as ragweed were all 5's.

My question after all of that is does it sound like I should eliminate some foods, or follow doctors advice and keep eating it. From what I read about Celiac I am so shocked that my test is negative. I have always had tummy issues growing up. I would go to the bathroom after every meal. I am only 5 feet tall and 100 lbs, and it seems like everything I eat that has wheat in it bothers me. Also - I read that sometimes celiacs were prone to miscarriage and I had a stillbirth. It's just like I could go down the whole list and say "yes" to all of the symptoms.

I am just praying for an answer so that I can continue to be a productive student, employee, and mother to my two beautiful children who do not deserve to deal with a mommy who is constantly halted by pain

I appreciate your reading this and any comments. I know it sounds a little long winded - but my frustration level is at a max level right now.

[sugarsue]

  SLB5757 said:

I have two little ones and am a single mom so it is difficult to not be able to a pain-free day.

I had allergy testing done and my allergist suggested omitting wheat because I showed an allergy to it as well as soy, corn, peanuts, and carrots (and many environmental allergies). He said to omit wheat for 6 mos. then try and introduce it once every 4 days. My regular doc said do not eliminate wheat and feels I have ibs. He said to INCREASE the fiber with whole grains and fruits and veggies. \

My question after all of that is does it sound like I should eliminate some foods, or follow doctors advice and keep eating it. From what I read about Celiac I am so shocked that my test is negative. I have always had tummy issues growing up. I would go to the bathroom after every meal. I am only 5 feet tall and 100 lbs, and it seems like everything I eat that has wheat in it bothers me. Also - I read that sometimes celiacs were prone to miscarriage and I had a stillbirth. It's just like I could go down the whole list and say "yes" to all of the symptoms.

Hi, first of all, BIG HUGE HUGS TO YOU! As a single mom to 2 beautiful girls, I know you want and need to feel your best. I wish you the best of luck in figuring out what is best for you and your family life.

In my signature you will see that I am allergic to wheat. I am not celiac or gluten intolerant that I am aware. I never would have gone gluten free if it were not for my daughters who needed it. My doctors never recommended it even though my allergy tests came back significantly allergic (I'm not sure any more what the number was but it indicated that it was a significant factor into my allergic load). Now that I am wheat free, I can't eat any wheat without getting the "dreaded itch" which is a horrific itch under my arms that I never want to repeat. I used to get a very horrible rash 2-3 times a year that the doctors would say was contact dermatitis and I would have to use a heavy steroid to stop it from spreading all over my body. Since going wheat free (KNOCK ON WOOD) it as not come back. Going wheat free was the best thing I have done in addition to finding out about my iron and vitamin D deficency.

Just know that if you don't feel like you have the energy to be the parent you want to be to your children, then something is wrong. Listen to your heart and find the doctor(s) who will support you in finding out the answers for you.

Again, HUGS TO YOU!

[nasalady]

  SLB5757 said:

Hello all:

This is really my last resort. I am so confused at this point that I do not know what to do anymore

My symptoms started about 3 years ago shortly after the birth of my son. I had about 4 weeks of diarreah and then it quit. After that I would start to get bloating and sharp left sided pain after eating. It is always high and under left ribcage. It feels as though it is a cramping or something is swelling up if that makes any sense at all. I can only say it comes on quick...and stops me with whatever I am doing. I have two little ones and am a single mom so it is difficult to not be able to a pain-free day.

I have had a gall bladder hida scan, a gastric emptying scan, and lots of bloodwork that was all fine. I had a negative celiac test ( one where my family doc just sent blood away to a lab then told me it was negative), and then had an endoscopy that showed mild inflamation probably due to acid reflux. I started on Nexium about a month ago. This does nothing for the sharp pain that will come on after eating. It's every meal except grilled chicken and plain unbuttered white rice I had allergy testing done and my allergist suggested omitting wheat because I showed an allergy to it as well as soy, corn, peanuts, and carrots (and many environmental allergies). He said to omit wheat for 6 mos. then try and introduce it once every 4 days. My regular doc said do not eliminate wheat and feels I have ibs. He said to INCREASE the fiber with whole grains and fruits and veggies.

I am so confused. When I eat Oatmeal or wheat bread or anything fiberous I about die. I start belching and bloating and get sharp pains. My wheat "allergy" was tested via a RAST test and registered a 3 on a scale of 0-5. The catgories said 0- negative...0/1, 1, 2, 3, 4 and 5 all positive. I'm not a 5 on wheat. and for soy, peanuts, corn, and carrots I was only a 3. Cultivated wheat pollen and cultivated corn pollen as well as ragweed were all 5's.

My question after all of that is does it sound like I should eliminate some foods, or follow doctors advice and keep eating it. From what I read about Celiac I am so shocked that my test is negative. I have always had tummy issues growing up. I would go to the bathroom after every meal. I am only 5 feet tall and 100 lbs, and it seems like everything I eat that has wheat in it bothers me. Also - I read that sometimes celiacs were prone to miscarriage and I had a stillbirth. It's just like I could go down the whole list and say "yes" to all of the symptoms.

I am just praying for an answer so that I can continue to be a productive student, employee, and mother to my two beautiful children who do not deserve to deal with a mommy who is constantly halted by pain

I appreciate your reading this and any comments. I know it sounds a little long winded - but my frustration level is at a max level right now.

Welcome to the forum!! I hope you find some answers here.

OK, one of your doctors said to eliminate wheat, and the other said not to. You are going to have to make a decision here.

First, you've noticed that you have a bad reaction when you eat wheat or products that have been contaminated with wheat (such as regular oats).

Second, you do have a doctor (assuming your allergist is a doctor) encouraging you to stop eating wheat. The gluten free diet is NOT harmful in any way. If you go gluten free you will know fairly quickly if it's making a difference.

Just so you know, many people here who have gone gluten free find that they have additional food issues as well; some have to stop eating corn, soy, dairy, etc., in order to really heal.

If you have celiac disease, you should never eat wheat again; your allergist's idea of re-introducing it after 6 months won't work.

I was told I had IBS for more than thirty years; I just recently found out that I have celiac disease. If I had known earlier I could have saved myself SO much pain and possibly prevented many of my autoimmune diseases from developing! Just because a doctor says you have IBS does not make it so.

Yes, you should listen to doctors, but you should ALSO do your homework. Doctors are educated human beings who are generally well-intentioned, but they don't know everything and just like everyone else, they have their biases.

If you think that you want to be tested again for celiac disease, you should NOT stop eating gluten until after all of the testing is finished. Be sure to eat the equivalent of 2 or 3 slices of bread every day for several weeks before blood tests and/or biopsy or your tests may yield false negatives. If your current doctor will not test you for celiac disease, you may be able to find another doctor (perhaps a gastroenterologist) who will.

Good luck with everything!

JoAnn

[SLB5757]

  sugarsue said:

Hi, first of all, BIG HUGE HUGS TO YOU! As a single mom to 2 beautiful girls, I know you want and need to feel your best. I wish you the best of luck in figuring out what is best for you and your family life.

In my signature you will see that I am allergic to wheat. I am not celiac or gluten intolerant that I am aware. I never would have gone gluten free if it were not for my daughters who needed it. My doctors never recommended it even though my allergy tests came back significantly allergic (I'm not sure any more what the number was but it indicated that it was a significant factor into my allergic load). Now that I am wheat free, I can't eat any wheat without getting the "dreaded itch" which is a horrific itch under my arms that I never want to repeat. I used to get a very horrible rash 2-3 times a year that the doctors would say was contact dermatitis and I would have to use a heavy steroid to stop it from spreading all over my body. Since going wheat free (KNOCK ON WOOD) it as not come back. Going wheat free was the best thing I have done in addition to finding out about my iron and vitamin D deficency.

Just know that if you don't feel like you have the energy to be the parent you want to be to your children, then something is wrong. Listen to your heart and find the doctor(s) who will support you in finding out the answers for you.

Again, HUGS TO YOU!

Thank-you so much for your reply. This has been a long road - as I see it has been for many. I am so new the forum - I will have to set up signatures and what have you. It seems like I eliminated some history that may be of relevance. My father has GERD/stomach issues and has for 20 years or so. He takes Nexium, fiber, and acidophilous. My brother has tummy issues and takes two Nexium, and was recently diagnosed with a bochdelek hernia, and with multiple allergies including Wheat. It just seems to be a family history with us. Even my two little ones ( 9 year old girl and 3 year old boy) Have had tummy issues. The 9 year old gets terrible pains after eating Spaghetti or Pizza, and my little guy is always hiccuping. They were both kept on Soy formula until 2 years of age because they couldn't handle the milk based formulas or milk.

I feel like if I find a good doc who would look at my family history - maybe all of this would make sense to someone. I live in a semi-small town, and we have 3 Gastroenterologists - all in the same practice. I saw one who did numerous tests and I feel like if I switched to another in the practice they would just kind of adopt the other partners ideas on what may or may not be happening with me.

I appreciate your kind words and encouragement, and will probably end up gluten free as well. When I stick with grilled chicken and rice I am fine. Its not a fun thing to deal with - but neither is any other disease - and I try and keep reminding myself it could be worse. I gave in last night at about 5:00 to pizza and breadsticks with the kids -assuming that I would follow the family docs orders - and have been paying for it ever since. My insides feel raw and inflamed. It's gonna be a good day - Im going to try the wheat free for a few days and see how much better I feel.

Thanks again for your support

[SLB5757]

  nasalady said:

Welcome to the forum!! I hope you find some answers here.

OK, one of your doctors said to eliminate wheat, and the other said not to. You are going to have to make a decision here.

First, you've noticed that you have a bad reaction when you eat wheat or products that have been contaminated with wheat (such as regular oats).

Second, you do have a doctor (assuming your allergist is a doctor) encouraging you to stop eating wheat. The gluten free diet is NOT harmful in any way. If you go gluten free you will know fairly quickly if it's making a difference.

Just so you know, many people here who have gone gluten free find that they have additional food issues as well; some have to stop eating corn, soy, dairy, etc., in order to really heal.

If you have celiac disease, you should never eat wheat again; your allergist's idea of re-introducing it after 6 months won't work.

I was told I had IBS for more than thirty years; I just recently found out that I have celiac disease. If I had known earlier I could have saved myself SO much pain and possibly prevented many of my autoimmune diseases from developing! Just because a doctor says you have IBS does not make it so.

Yes, you should listen to doctors, but you should ALSO do your homework. Doctors are educated human beings who are generally well-intentioned, but they don't know everything and just like everyone else, they have their biases.

If you think that you want to be tested again for celiac disease, you should NOT stop eating gluten until after all of the testing is finished. Be sure to eat the equivalent of 2 or 3 slices of bread every day for several weeks before blood tests and/or biopsy or your tests may yield false negatives. If your current doctor will not test you for celiac disease, you may be able to find another doctor (perhaps a gastroenterologist) who will.

Good luck with everything!

JoAnn

JoAnn,

Hello and thank you for responding I have become so ingrossed with "doing my homework" and reading through everything I can find on the internet that I think sometimes it just ends up confusing me more. I agree 100% that if you are Celiac you do not eat wheat/gluten ever again. My allergist just said that I was allergic. They honestly feel I should eliminate soy, corn, oats, peanuts, carrot and many others as well - but know it's difficult to do. He suggested getting the largest one under control first and hope that lessens my troubles. I really do know in my mind what I can and cannot eat safely - it has been 3 years now - but I do not want to be limited to rice and chicken and a few cooked veggies. It doesn't seem to be very healthy to eat that day in and day out. It takes away your quality of life to an extent (not that gripping tummy pains is any better quality).

I may never know exactly what is wrong. Like I told the girl who posted earlier there seems to be a family history leading back to my fathers mother who used to down Pepto Bismol like it was nothing. My father has GERD and takes Nexium, fiber, and acidophilus. My brother has GERD and takes 2 Nexium...he also has a bochdelek hernia and numerous allergies including Wheat. My daughter who is 9 shows a Wheat intolerance because the two foods that give her issues are Spaghetti and Pizza (guess it could be the red sauce?). And my little guy has common Celiac attributes. He is short in stature like me, has the distended tummy that people just write off as the "baby belly", is very finicky when he eats,and hiccups or belches after eating.

I appreciate everyones experience and support. Thank you for your replies:)

I hope everyone is feeling better very soon.

[ang1e0251]

You have some tough choices to make, as an individual and a mother. I think you already have the answers you need. Your body and your children's bodies are telling you, very clearly, that you cannot tolerate wheat. Blood tests can give false negatives and so can the biopsy. I guess you may not really know concretely whether you have a wheat allergy or gluten intolerance or celiac disease.

Does it really matter to know which it is? What if you just assumed the worst and started the gluten-free diet? It's not harmful for you or your children and you could see if it is beneficial to you. It would expand your food diet although I would suggest you give up the fresh dairy too at least for a time.

Keep a food/symptom journal too. That can help so much when you are trying to narrow down problem foods.

It's your decision. It's so hard to be in limbo worrying about every bite you put into your mouth. The dr's have consulted with you, now take all the info you have including your body's response, and make a plan

[SLB5757]

  ang1e0251 said:

You have some tough choices to make, as an individual and a mother. I think you already have the answers you need. Your body and your children's bodies are telling you, very clearly, that you cannot tolerate wheat. Blood tests can give false negatives and so can the biopsy. I guess you may not really know concretely whether you have a wheat allergy or gluten intolerance or celiac disease.

Does it really matter to know which it is? What if you just assumed the worst and started the gluten-free diet? It's not harmful for you or your children and you could see if it is beneficial to you. It would expand your food diet although I would suggest you give up the fresh dairy too at least for a time.

Keep a food/symptom journal too. That can help so much when you are trying to narrow down problem foods.

It's your decision. It's so hard to be in limbo worrying about every bite you put into your mouth. The dr's have consulted with you, now take all the info you have including your body's response, and make a plan

Thank you for your response!! This is my second day gluten free. After eating pizza/breadsticks the other evening with the children and becoming very ill for two days (on verge of going to ER), I decided to try gluten free. I have already been told I have a wheat allergy - so that will be my voice of reason,a long with the responses from my body. Considering I have a brother with the same wheat allergy - I might as well give this a try.

Even late last night which was about a day and a half into being gluten free - I could actually breathe again. Before, every time I would take a breath in I would get a sharp left sided pain under my ribcage because my tummy was so bloated and gassy all of the time. I constantly felt like I was going to explode. I sincerely pray that each day I feel better and better. Even if the results stayed at the level they are now - two days into it - I wouldn't touch wheat again. I can't even explain the difference and how much pain I was really having. I wasn't sleeping at night, and had completely stopped laying on my left side for over 3 years because I would get sharp pains if I did. It always felt as if something was "swollen" inside, or that my insides were just raw and revolting against me .

I am trying my best to be a good label reader - and have ordered some books to help out. I am only 100 lbs. as it is, so I need to make sure I am still getting adequate nutrition while working around the other allergies to soy, corn,and oats and carrots. My allergist said eliminate wheat first then we will worry about the others. I know Corn has a higher sensitivity for me than soy does, so maybe that one will be next. One step at a time...and I know things will get better

I appreciate all of the support here! Thank you so much for listening.

[Lisa A]

If at some point you think you might want a definitive yes or no to celiac disease, you really ought to get a second blood test done NOW before you are 100% gluten free for much longer. Otherwise if you decide later, when you've been gluten-free for months or years, the only option to get a diagnosis is to do the gluten challenge. The gluten challenge is no fun at all... I know because I'm doing it right now. After being gluten-free for any length of time, it's common to feel even more ill than you did in the first place, when you reintroduce wheat or gluten.

So, seriously consider going for the blood work now, otherwise an official diagnosis becomes difficult or impossible later. There are lots of good arguments why you might want an official diagnosis.

There are false negatives. Even though you had the one blood test for celiac, it might be a good idea to go for a second just to confirm it.

[imartsy]

where do you find out about these tests? I don't think I have celiac's - when I eat wheat I just get really bloated and I have to burp all the time and some times my left side hurts or gurgles a lot.

But I don't know how to find out about a doctor that could perform a wheat allergy test. The allergy place that I go to I guess didn't test for that... they said that you couldn't test for it.

I've been trying to be gluten-free since June of last year (2008) because I thought "why not try it", and it seems to help - but I'd really like a definitive answer to whether or not I have celiac's, or a wheat allergy, or what.

How can I find a test? Does a gastroenterologist usually give them? I've been to one gastroenterologist and they told me I had gastroenteritis and put me on Nexium - which was useless - as you describe.

Can anyone help?

[mushroom]

  imartsy said:

How can I find a test? Does a gastroenterologist usually give them? I've been to one gastroenterologist and they told me I had gastroenteritis and put me on Nexium - which was useless - as you describe.

Can anyone help?

The initial test for celiac disease is a blood test, called the celiac panel, which consists of the following tests:

Anti-gliadin (AGA) IgA

Anti-gliadin (AGA) IgG

Anti-Tissue Transglutamise (tTg) IgA

Total Serum IgA

Anti-Tissue Transglutamise (tTg) IgG

Endomesial Antibody (EMA) IgA

Your PCP can order this for you.

The next step in the testing is an endsoscopy where they insert a tube (under sedation) into your small intestine and take samples of tissue from the lining to checke whether there is any villous atrophy and/or inflammation. This test is performed by a gastroenterologist.

[HiDee]

  imartsy said:

where do you find out about these tests? I don't think I have celiac's - when I eat wheat I just get really bloated and I have to burp all the time and some times my left side hurts or gurgles a lot.

But I don't know how to find out about a doctor that could perform a wheat allergy test. The allergy place that I go to I guess didn't test for that... they said that you couldn't test for it.

I've been trying to be gluten-free since June of last year (2008) because I thought "why not try it", and it seems to help - but I'd really like a definitive answer to whether or not I have celiac's, or a wheat allergy, or what.

How can I find a test? Does a gastroenterologist usually give them? I've been to one gastroenterologist and they told me I had gastroenteritis and put me on Nexium - which was useless - as you describe.

Can anyone help?

You could look at enterolab.com which can do a stool test for gluten sensitivity. Other celiac tests are blood tests and biopsy which require you to eat gluten again for several weeks before being able to perform those tests as Lisa has already commented about. Again, you can get false negatives, many people have negative blood tests and positive biopsies. Doing the diet and having symptoms go away sounds like a positive to me and I wouldn't feel any need to do more testing if it were me. That seems to be proof enough and the prescription is the same for celiac or gluten sensitivity, a gluten-free diet. Obviously a wheat allergy is a little different because you could technically have things with Barley or Rye gluten in them as long as they don't have wheat. Like Rice Crispies for example, they contain Barley Malt which is a no-no on the gluten-free diet but should be fine if it's a wheat allergy. That seems odd that they can't test for a wheat allergy? Wheat is one of the 8 most common allergens. Anyway, if Nexium didn't work and the diet did, why spoil a good thing? Or at least tell the dr. the drugs didn't work and maybe he'd be more willing to look into testing for celiac.

[SLB5757]

Well I went to the doctors AGAIN after a bad episode with sharp pain in my left side. he told me I have IBS...and I will have to "deal" with it and move on. he said he will refer me to Ohio State medical center which he calls the "mecca" in Ohio, but after they prove that everything is fine I have to "stop all of this' and "no more doctors". He basically acted as though I was crazy and just have to deal with the pain. He stated I have a stronger mind/gut reaction than most and just have to cope with it. he also said do NOT eliminate wheat or any other foods even though the allergist said I was allergic to soy, peanut, corn, wheat, carrots, and so many other things. So ughhhhh.

So FRUSTRATING

Last night I ate 3 pieces of Pizza, and had two servings of corn...listening to my doctors advice that I am a "perfectly healthy individual who should eat everything". Within maybe 30 minutes I had the worst sore throat I have ever felt. My voice was hoarse and it was getting hard to breathe. I sucked on Halls all night, and was almost panicky because things got so bad so quickly:( I do not know if it was a allergy episode, a acid reaction, or if I am just sick...but it's really upsetting not to know. I woke up this AM with no sore throat, so it almost to me seemed like an acute sort of allergy reaction rather than acid since I take Nexium around 10 AM.

My appointment with OSU Gastroenterology isn't until June 1st...(first available), so I am praying I can last.

[beanpot]

I tested positive on a scratch test for wheat allergy about 10 years ago. At the time, since other reactions like to nightshades were gigantic welts, I paid attention to those and didn't eliminate wheat. I never noticed an actual allergic reaction to wheat. About 5 years after that I had a celiac blood panel which came out negative. After that I developed IBS. After 3 years now of GI symptoms I tried the gluten free diet and have had an extremely positive response, not just for GI symptoms, but for other things too.

So I know that wheat allergy is different from Celiac, but I think you can have both.

[SLB5757]

Went to the Primary doc today to get a referral to another gastro because my referral to OSU Medical Center did not get approved by my insurance I also followed up with the docs that originally did my endoscopy two years ago and asked them specifically if they tested for Celiac b/c I remember biopsies being taken. They said they are unable to locate anywhere in the notes or my file that I was tested for Celiac at the time of my scope. Why would they go to trouble of biopsy and then not look for that??!!?? The Gastro who performed the scope is no longer in the practice (hmmm...she was new to the practice when I had scope and is already gone!), and no one has answers as to why I wasn't checked for it. I am frusturated because I seem to be the poster child for Celiac...yet no one will diagnose. I like many on this forum would like answers so that everyone else in my circle as well as myself can finally accept something IS wrong - and I do not choose to be in pain daily