Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Clarification From Doctors Visit


jtangema

Recommended Posts

jtangema Apprentice

Hi,

I met with my GI doctor last week. I was diagnosed in February and have been on the gluten-free diet since then. I haven't felt any differently since then. Last weekend I ate something that had wheat in it (didn't know til after i ate it) and didn't get any symptoms afterwards. So I visited my doctor to follow up and make sure I am doing things correctly.

He told me that it isn't worth doing another blood test to see if I am still being contaminated because some people do get better levels with the diet and other people don't see any changes in their numbers even on the diet. He told me that I just have it very mild and that I may never get symptoms from eating gluten. I asked about other food allergies and he didn't seem too concerned about testing for that- he said I could do a fructose and lactose intolerance test, which I will do.

I am just concerned because I didn't get any answers out of him and am very frustrated. I don't know it I need to change something or if this is just the way it will be. Any help would be great!

Thanks

Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

How were you diagnosed? Were you feeling bad last Feb. when you started the diet -- what were your symptoms that made them suspect celiac? That info would help me answer you more specifically.

Ursa Major Collaborator

Oh, no, not another clueless doctor! He is utterly wrong about numbers not changing for some people even when on the diet. If that happens, it means that they aren't really gluten-free, so is significant.

There is no such thing as having celiac disease very mild. You either have it, or you don't. Some people get terrible symptoms, and apparently you don't. But that doesn't show the damage that occurs in your intestines. I've heard of people who's villi were completely destroyed, yet their only symptom was anemia!

You may want to eliminate dairy (and I mean ALL of it) and soy, to see if it makes a difference. Those two are the most common ones people with celiac disease have also. Also, both can destroy your villi as well.

If you see an improvement, that means that one of them (or both) are a problem as well. Most people with celiac disease can't tolerate dairy at least for a while, until their villi are completely healed. Some are able to have it again after that.

Also, have you made sure you have eliminated all possible sources of cross-contamination? There is so much doctors don't know, and therefore don't tell you. You need to go through all your personal care products, as many contain gluten. Check your shampoo, conditioner, mousse (if you use any), lotion, lipstick/lip balm, soap, toothpaste etc. for things like 'wheat germ oil', barley extract and oat bran. Replace everything that has one of those with gluten-free brands. Also, watch out for vitamin E, as it is often made from wheat germ oil.

If you still use your old toaster you're likely glutening yourself. The same goes for plastic colanders and wooden cutting boards and cooking spoons, and scratched non-stick cookware.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do for now.

I hope you figure it out. Forget about your doctor, it's better to figure it out yourself, you can do it with help from this site!

chrissy Collaborator

this is exactly why we do follow up tests on our girls----to see how well they are staying gluten free.

AndreaB Contributor

I am one that didn't have symptoms with eating foods, that I knew of. I had allergy testing done and got the results in April and then went through enterolab in May (see sig). Now if I get glutened I have stomach/intestinal distress until it clears my system but it's not bad.

Stay gluten free and I second Ursula. Go soy and dairy free. I would suggest going off of both of them for 4-6 months and then adding back in one, if you desire, after that to see if you have a reaction.

I am gluten, soy and dairy free and have posted in the recipes section some recipes that I have from some cookbooks. It's an adjustment but totally doable. Many on this forum are free of those 3 things. Many more are free from 2 of them.

gfp Enthusiast
Oh, no, not another clueless doctor! He is utterly wrong about numbers not changing for some people even when on the diet. If that happens, it means that they aren't really gluten-free, so is significant.

Yes but I think in this case its possible the advice isn't SO bad... perhaps just confusing....

There is no such thing as having celiac disease very mild. You either have it, or you don't. Some people get terrible symptoms, and apparently you don't. But that doesn't show the damage that occurs in your intestines. I've heard of people who's villi were completely destroyed, yet their only symptom was anemia!

You could also take it that the GI means symptoms wise.... I mean reading jtangema's post and allowing for the normal level of confusion we all mostly had when first diagnosed I think what he meant was pretty much what you just said. That is he was refering to symptoms ... He obviously made it clear that this didn't mean it was OK to cheat so I think the "mild" he's refering to symptoms.

On repeated antibody testing ....

I think this is completely different for adults and kids....

With kids it is necassary because the parents need to know how well the kids are keeping to the diet. In adults I can see why he doesn't want to keep testing... (my GI always wants to test me amd I refuse) ...

The logic here is if you have been accidentally glutened or are just not keeping to the diet.

Someone might not react quickly to a single glutening in terms of antibodies... and antibodies are going to hand around for a long time after.

In my situation, I know from time to time I get glutened through eating out... its a fact of life of eating out IMHO and I do everything to minimise it but you can't eliminate the risk other than not eating out.

So keep testing me randomly and I'll have elevated levels from time to time BUT I do understand why.

However: andthis is a big however...

You may want to eliminate dairy (and I mean ALL of it) and soy, to see if it makes a difference. Those two are the most common ones people with celiac disease have also. Also, both can destroy your villi as well.

If you see an improvement, that means that one of them (or both) are a problem as well. Most people with celiac disease can't tolerate dairy at least for a while, until their villi are completely healed. Some are able to have it again after that.

Also, have you made sure you have eliminated all possible sources of cross-contamination? There is so much doctors don't know, and therefore don't tell you. You need to go through all your personal care products, as many contain gluten. Check your shampoo, conditioner, mousse (if you use any), lotion, lipstick/lip balm, soap, toothpaste etc. for things like 'wheat germ oil', barley extract and oat bran. Replace everything that has one of those with gluten-free brands. Also, watch out for vitamin E, as it is often made from wheat germ oil.

If you still use your old toaster you're likely glutening yourself. The same goes for plastic colanders and wooden cutting boards and cooking spoons, and scratched non-stick cookware.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do for now.

I agree 100% ... as I have repeatedly said..just post diagnosis is when we were all at our lowest both physically and mentally.

My heartfelt advice for ANYONE newly diagnosed is do it 110%....because this will set you into recovery much faster and not keep setting you back while you gain knowledge on other issues like hidden gluten and CC.

I have to say I don't think this GI is half as bad as most because he is actually treating the adult patient as an ADULT... what they are missing out of is what you can only learn by going gluten-free ... which is all the potentiual sources of CC and hidden gluten.

jtangema: Its perfectly normal to be confused at this point. we all were too.

I hope you figure it out. Forget about your doctor, it's better to figure it out yourself, you can do it with help from this site!

I wouldn't say forget this Dr. they seem at least 50% clued up which is 49% higher than most GI's! Honestly I think this is a GI you can work with. The ones I would say forget are the ones who insist on repeated challenges ....I think your confusion is probably not understanding the GI and that doesn't mean your stupid ... diagnosis is often like a bombshell and when we walk away we are often left confused simply because it was too much to take in.

My advice is pretty much as Ursual said....

Firstly eliminate gluten 100% to the point of no possible contamination.... prepare yourself for 2-3 months of cooking everything yourself... because in this tiome your body will repair AND you will learn a heck of a lot ...

When your first diagnosed you have maximum damage so your whole digestive system is functioning at minimal efficiency. Just a single accident can knock you back a week in recovery so its like 3 steps forwards and one back.

If you can then simply take away that risk as much as possible... including pans, toaster ovens and stuff.

This will make it much easier to stay gluten-free ....

Once you reach a point (you yourself will know) then you can start experimentally adding eating outside the house (its a whole new game.. you have to transfer what you know to a waiter and make sure he tells the chef... BUT you need to be very certain to do this efficiently)

Foods like soy and dairy do affect a lot of people especially at first because the intenstines are so damaged that these react as well. My diary tolerance is pretty much linked to how well I have been gluten-free... whne I have an accident my dairy tolerance plumets .. when I'm good for a long time its much better and I get very mild reactions sometimes.

Soy I have always been OK with (so gfar as I can tell) BUT... I choose to limit it...

I don't think my body processes it too well bUT also I don't want to start eating a lot of it and end up with another intolerance! This would seriously limit what I could eat.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do

for now.

Couldn't agree more :D

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.