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Doctor Says It's Not Celiac/gluten Intolerance

Greekbabyyy

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Greekbabyyy Newbie
Greekbabyyy
Posted

Hi guys!

I've been suffering gastro. issues for God knows how long. It has been so stressful, irritating, and symptoms make me miserable every day.

I've seen 2 gastros., all which claim that I have IBS and acid reflux. I am also lactose intolerant.

I went to another gastro. the other day. I described him my symptoms, which were:

  1. On an off constipation or very loose stools. One minute I'm constipated then the next day I have the runs.
  2. Tons of abdominal discomfort of all sorts.
  3. Bloating.
  4. Gassy.
  5. Chronic indigestion.
  6. Feeling the way I do makes me irritable.
  7. I already have osteopenia at the age of 18.
  8. Nasty tingling and burning in my feet.
  9. A lot of fatigue.
  10. Sometimes I'll have fatty stools, but not always.

All the doctor told me was that I have IBS and lactose intolerance (which I already know). He told me to go on a lactose free diet for this week, and then switch to Metamucil for the next two weeks to tackle my IBS. In the meantime, he told me to keep a food journal.

I asked him about Celiac disease or a gluten intolerance, and he says he 95% believes I do not have Celiac disease or a gluten intolerance. I did get tested for Celiac 2 years ago and the blood work came out negative.

For example, when my symptoms go away after a night's sleep, I'll have gluten free/egg free/dairy free waffles and an apple. I feel fine when I eat it and no symptoms show up.

But for instance, I had a peanut butter sandwich, raisins, and Life cereal for lunch this afternoon and I cannot begin to tell you how miserable I am. I was totally fine after breakfast and now the whole table has turned over! Ah!

I see this guy again in three weeks, and I already know that a lactose free diet and Metamucil will not be helping me at all.

From the sounds of my "suffering" here, would you suspect a gluten intolerance of some sort?

Any advice is appreciated. Thank you!

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mushroom Proficient
mushroom
Posted

I would indeed be highly suspicious. The first clue that all is not right is the lactose intolerance; while many adults do not tolerate lactose, when you combine that symptom with GI issues in general you will often find the intolerance is caused by damage to the villi in the small intestine as a result of the ingestion of gluten. You say you have osteopenia at age 18 - this is highly suspicious. Have you had your vitamin D levels checked? Vitamin D insufficiency leading to osteoporosis is common in those with gluten intolerance because of failure to absorb sufficient nutrition because of gut damage caused by gluten. Now the bloating and gassiness could come from either undigested food or undigested milk. So it is not possible to differentiate here. Neurological issues (tingling and burning in the feet) are a common issue with gluten intolerance. So is fatigue and irritability. Fat in the stool is indicative of a poor digestive process and possible insufficient production of pancreatic enzymes, also a common side effect of gluten. Acid reflux is a common symptom. Alternation between constipation and diarrhea is common.

Now you say you had a negative test two years ago. Number one, that does not mean you will test negative today, but even if you did that does not tell us whether or not you are gluten intolerant, it just tells us that you do not meet the criteria for a diagnosis of celiac disease (or at least the criteria to perform a biopsy to check for damage to the small intestine). So your doctor is not being at all proactive here; do not accept a diagnosis of IBS because this is just a description of symptoms, not a diagnosis at all. If you cannot get him to repeat the celiac test, I would do either of two things: get another doctor who will test you; regardless of the results of that test and/or if you do not get a new doctor, give the gluten free diet a good three month trial (while also, of course, avoiding dairy). If your tingling and numbness improves along with your GI symptoms and mood, you have your answer - you should not eat gluten. Regardless, you need to get your Vitamin D levels checked right away and most likely start on a high-level supplementation program.

Good luck in your diagnostic journey.

WheatChef Apprentice
WheatChef
Posted

Alternatively, if that tingling/burning is itchy then it's likely a yeast infection (athlete's foot), which when recurrent is also another symptom of a gluten intolerance. Overall the only good thing your doctor did was to recommend that you keep a food journal (VERY good idea) as any doctor who ever mentions IBS like it was an actual condition should have their license revoked. If you're of european descent then you're much more likely to have the genes for a gluten intolerance than a lactose intolerance, yet the gluten intolerance will cause a secondary lactose intolerance!

Make that food journal though!

lilbit Apprentice
lilbit
Posted

I'm a sero-negative biopsy proven celiac... Ask for the biopsy. Even then... read the results yourself... Alot of doctors won't admit you have celiac... If it comes back as ANY SORT villious blunting, you know you are suffering from mal-absorption of some kind... OR, if you don't need the/ can't get the biopsy... just go gluten free for a few months and see how it goes. Many people are "diet-proven".

Good luck!

Laennie Rookie
Laennie
Posted

You sound almost just like me. I don't have osteopenia as far as I know but I have suffered many falls, broken bones & migraines or other neurological issues. Your GI issues are basically identical to mine. I also was given an IBS brush off in January. After I found out about Celiac Disease & thought I might have it I got a celiac panel ran. The doc suggested I go gluten free & see how I felt. Well test results were negative but I had already seen significant improvement going gluten free so I decided that was answer enough for me. I'm tired of dealing with doctors & tests etc. I've been gluten free 23 days & I feel like a different person. So no matter what your tests or doctors say you really should try to give the diet a try & see how you feel.

Good luck!

cassP Contributor
cassP
Posted

95% sure you dont have a gluten problem my a$$

all your symptoms COULD very well be related to gluten -ABSOLUTELY

i think you should find a different doctor... even if you didnt do any more celiac tests & just went with listening to your body's response, you'll probably want a more open minded doctor when you want to request tests for vitamin deficiencies, and thyroid tests, etc...

good luck- :)

Greekbabyyy Newbie
Greekbabyyy
Posted
  • Author

Hi everyone!

Thanks for all of the replies. I appreciate it!

I forgot to mention... I have been suffering with an eating disorder for quite sometime... which is where I have osteopenia from.

But for a couple years, I have been eating healthily under my parent's supervision and support. So, I've been doing well, besides these stupid stomach problems!

Now that I've mentioned the eating disorder part... you all may now think it may just not be gluten sensitivities/celiac disease anymore since now I mention the eating disorder part.

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mushroom Proficient
mushroom
Posted

Any eating disorder you may have had in the past has nothing to do with the things we (and you) are worrying about now. :) Have you been monitoring your vitamin D and had a bone scan recently to know where your levels are now?

You have heard from others that your symptoms are pretty classic celiac/gluten intolerance symptoms, so for the moment I think you should run with and explore that idea and see if it pans out.

cassP Contributor
cassP
Posted

your symptoms are all still so "classic" gluten issues... regardless of any eating disorders.

tho- an eating disorder could also trigger an autoimmune disease for sure. i actually was anorexic @ age 14-16ish... interestingly enough that's the same time i was getting tested for lupus... maybe it triggered my celiac??

i dont know what your disorder is- but let me share with you- that once i got off gluten- i felt more balanced - and not so emotionally and physically addicted to food. i can usually stop when im full, and when im hungry- it's because im actually physically hungry and not because my brain needs more opiate-like gluten.. i can go to a party and not be obsessed with the food the whole time instead of actually socializing with friends.. i still am trying to subdue my cheese & sugar addiction- but it's not like gluten- it doesnt completely control my life

hope u get off the stuff & find a good doc :)

Tina B Apprentice
Tina B
Posted

Hi guys!

I've been suffering gastro. issues for God knows how long. It has been so stressful, irritating, and symptoms make me miserable every day.

I've seen 2 gastros., all which claim that I have IBS and acid reflux. I am also lactose intolerant.

I went to another gastro. the other day. I described him my symptoms, which were:

  1. On an off constipation or very loose stools. One minute I'm constipated then the next day I have the runs.
  2. Tons of abdominal discomfort of all sorts.
  3. Bloating.
  4. Gassy.
  5. Chronic indigestion.
  6. Feeling the way I do makes me irritable.
  7. I already have osteopenia at the age of 18.
  8. Nasty tingling and burning in my feet.
  9. A lot of fatigue.
  10. Sometimes I'll have fatty stools, but not always.

All the doctor told me was that I have IBS and lactose intolerance (which I already know). He told me to go on a lactose free diet for this week, and then switch to Metamucil for the next two weeks to tackle my IBS. In the meantime, he told me to keep a food journal.

I asked him about Celiac disease or a gluten intolerance, and he says he 95% believes I do not have Celiac disease or a gluten intolerance. I did get tested for Celiac 2 years ago and the blood work came out negative.

For example, when my symptoms go away after a night's sleep, I'll have gluten free/egg free/dairy free waffles and an apple. I feel fine when I eat it and no symptoms show up.

But for instance, I had a peanut butter sandwich, raisins, and Life cereal for lunch this afternoon and I cannot begin to tell you how miserable I am. I was totally fine after breakfast and now the whole table has turned over! Ah!

I see this guy again in three weeks, and I already know that a lactose free diet and Metamucil will not be helping me at all.

From the sounds of my "suffering" here, would you suspect a gluten intolerance of some sort?

Any advice is appreciated. Thank you!

What does it matter if you have a diagnosis? If you feel better not eating gluten then just don't eat it. Pretty simple.

T.H. Community Regular
T.H.
Posted

Sounds like you're a likely candidate. Eating disorder or not, your symptoms are, as has been said, pretty classic. Yes, they can be tons of other things, but you're already noticing yourself a difference after changing your eating patterns: that's how they used to test for this in the days before the blood tests.

Sometimes, sadly, the old tests are better for us than the new ones, especially when the doctors pay more attention to the tests than to their patients' words.

Especially as - if you have celiac disease, a likely side effect IS lactose intolerance.

Have you mentioned to them that you have a change after you go gluten free? If not, you really want to. If you need the diagnosis, I would stand up and ask for the biopsy, or another blood test (just because it was negative before doesn't mean it will be again. It can trigger any time in your life, or the damage can increase). And then say you are going to eat gluten free and have a gluten challenge, if that is negative.

If the doctor won't listen, or pay attention, to what you are saying, I'd try to get a new one.

Greekbabyyy Newbie
Greekbabyyy
Posted
  • Author

Hi guys!

Thanks again for all of your helpful words. I'm glad to at least here that I'm not being accused for having an eating disorder in cause of a gluten intolerance!

I do notice a difference when I don't eat anything that contains gluten.

For example, I had two slices of Van's gluten free/egg free/dairy free waffles and an apple for breakfast yesterday. God, did I feel good because my stomach didn't act up.

Later for Thanksgiving, I was telling my mother how I shouldn't really have some certain foods because it contained dairy (her rice has butter in it). She told me, "Heck, it's Thanksgiving. Enjoy yourself."

So being stupid, I took two lactose pills, which I knew were not going to help since they don't seem to be very effective anymore. I had some turkey, rice, corn, salad with croutons, and some baked apple slices. My stomach started acting up. :(

Then for dessert, since I don't like pie, the only thing left that I could eat was my grandmother's Greek pastry made fully of semolina (wheat). After I ate it, I suffered with pain, misery, gas, and extreme bloating the whole night. The discomfort has not disappeared this morning either... which isn't good.

When I see this doctor next, I'm going to try and push for further tests of some sort. I really need to get down to this problem. He's just so strongly against a food intolerance and Celiac disease. His words were, "I know you don't have Celiac disease and don't show any indication of a food intolerance. Going on a gluten free diet is intense, and I don't want you doing that." :unsure:

I really want to find a new person... but my mother likes this guy. Honestly, trying to go lactose free and going on Metamucil for the next two weeks is not going to help me. I've done it in the past (except Metamucil was Miralax instead) and it didn't help at all.

cassP Contributor
cassP
Posted

who cares if your mother likes this guy- he obviously is not listening to you-

if you feel better NOT eating gluten, then you shouldnt... the only reason you should ever be continuing to eat gluten & relying on metamucil is if you're getting ready to do another a Celiac test or biopsy and you want the results to be accurate

BleuPhire Newbie
BleuPhire
Posted

your symptoms are all still so "classic" gluten issues... regardless of any eating disorders.

tho- an eating disorder could also trigger an autoimmune disease for sure. i actually was anorexic @ age 14-16ish... interestingly enough that's the same time i was getting tested for lupus... maybe it triggered my celiac??

i dont know what your disorder is- but let me share with you- that once i got off gluten- i felt more balanced - and not so emotionally and physically addicted to food. i can usually stop when im full, and when im hungry- it's because im actually physically hungry and not because my brain needs more opiate-like gluten.. i can go to a party and not be obsessed with the food the whole time instead of actually socializing with friends.. i still am trying to subdue my cheese & sugar addiction- but it's not like gluten- it doesnt completely control my life

hope u get off the stuff & find a good doc :)

That's exactly how I feel when I am gluten free and one of the things that is keeping me from cheating. When I do "cheat" all I think about is what I'm gonna eat next. I don't have insurance to get tested formally but I like how I feel without it.

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    • knitty kitty
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