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

Can't Decide

missj

Recommended Posts

missj Rookie
missj
Posted

I have been struggling with intestinal symptoms now for at least 6 months. I have seen my primary care doc, who jumped to the conclusion of Ulceritive Colitis (no testing done. This was based on the fact my mother had it.) I went to a gastro, who charged me $328 to tell me to eat more fiber (without asking me about my current diet), take Phillips Milk of Magnesia Capsuls and tell me there is no way I had Celiacs because I don't have classic symptoms and blood tests came back negative(I have no idea what kind of tests have been done). She also said it was more likely that I had Ulcerative Colitis-when I brought the point up that I have NO classic symptoms of that, she made it known that everyone presents differently.

I'm so confused. I know something is up but I don't want a bunch of invasive tests or to take a bunch of medicine. I still have all symptoms but now I have diarreah as well from the magnesium oxide (Phillips Capsuls). Should I be getting a new doctor? Should I just cave and get the colonoscopy and endo? So lost at this point.

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

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted

Hmmmm... this is just my opinion, but if you and your doctor are not a team... if your doctor talks "at you" and not WITH you... you should probably find another. They need to listen to you, and give you time to tell them ALL of what is going on. If you like your doctor, make another appointment, and be prepared when you go in. By that I mean, make a list of EVERYTHING that is bothering you and go through the list with Dr.

Some things we don't think are related, in fact really ARE related... in the diagnostic world, and your doctor needs all your symptoms and time frames, etc, to make a good diagnosis. Start at the beginning and make a "timeline" list, and don't stop talking until you've voiced all your concerns, and then ask the doctor, "if it was your body, what would you do? " :) That usually jolts them back into reality, that you're a REAL person...not just another number. B) Good luck to you! Feel better soon!

eatmeat4good Enthusiast
eatmeat4good
Posted

Since you are here, you must be suspecting gluten could be the problem.

If you don't want to do the invasive tests, you could try going gluten free and see if it helps.

If you want to really know what is going on inside you, you will need to do the tests.

You still may not know for sure as the tests are not 100% accurate.

I decided not to have testing but went gluten free and I'm very glad I did.

I struggled with it for one night reading on this site, then decided if it was possible for it to be gluten that caused my symptoms, then I was going to try eliminating it.

I have never regretted it.

It solved all sorts of things I had as symptoms...things I never dreamed were related.

I was told to take Immodium if I had diarrhea and take Fiber capsules for more fiber. Same story as you. Months and months of Doctoring and no help.

I agree with the Ms.Curious that Dr.'s SHOULD be that way, but in my experience they are not.

If you want to try to figure it out on your own, you could do the gluten elimination and then elimination for other food intolerances like soy, dairy, nightshades, corn, fructose, and the major food allergens.

If you aren't successful with these things then you would have more information for the Dr. and you could then ask for testing.

There is more than one way to approach it, but what you need is a plan hopefully with a Dr. to help you figure out what is going on with your body. Or with an alternative medical person or nutritionist to help guide you. (Or with the help of the brilliant minds here) I have eliminated foods by reading here and it has solved my problems. Maybe you will be lucky and it will be a matter of finding out what foods you are intolerant of.

If you want Celiac testing, I would encourage you to call a NEW Dr. and when you make the appointment tell them just what you put here in this post. I'm having intestinal issues for 6 months now and I would like a complete celiac panel blood test done. If you start with that as your goal for the appointment, you may be more likely to get your labwork done and you could also ask about vitamin deficiency tests to see if you have malabsorption issues common to Celiacs then see what another Dr. says about having scopes and biopsies done. Or ask for them directly if that is what you really want.

I hope you find a Dr. who will listen to you.

It doesn't feel good to be brushed off with Milk of Magnesia when you don't know the real problem.

I feel for you and I hope you get some answers soon, either by food elimination or Dr. elimination!

Smarts Rookie
Smarts
Posted

I have been struggling with intestinal symptoms now for at least 6 months. I have seen my primary care doc, who jumped to the conclusion of Ulceritive Colitis (no testing done. This was based on the fact my mother had it.) I went to a gastro, who charged me $328 to tell me to eat more fiber (without asking me about my current diet), take Phillips Milk of Magnesia Capsuls and tell me there is no way I had Celiacs because I don't have classic symptoms and blood tests came back negative(I have no idea what kind of tests have been done). She also said it was more likely that I had Ulcerative Colitis-when I brought the point up that I have NO classic symptoms of that, she made it known that everyone presents differently.

I'm so confused. I know something is up but I don't want a bunch of invasive tests or to take a bunch of medicine. I still have all symptoms but now I have diarreah as well from the magnesium oxide (Phillips Capsuls). Should I be getting a new doctor? Should I just cave and get the colonoscopy and endo? So lost at this point.

oh boy - if you hadn't said that your gastro was a 'she' I would have been convinced you were talking about my EX-gastro!!!! I've talked long and hard about this one ever since I was in your shoes back in July. If you want to read my whole sordid history then I posted again the other day on the post diagnosis forum.

What seems to be clear to me is that:

1) There isn't only one symptom of celiacs disease - there are hundreds. Some are quite surprising in fact. Then again there are true Celiacs in the world who have never suffered any ill health from it at all

2) The allergen blood test has too many false negatives, a positive means you are celiac but a negative doesn't mean very much. For there to be any chance of it working you need to be on a high gluten (at least 8 slices of bread per day) diet for at least 8 weeks

3) The most conclusive test for a gluten intolerance is to eliminate all gluten from your diet and see what difference that makes. After at least a month re-introduce gluten into the diet and see if that has any affect.

4) Diagnosing Celiac disease in a patient is a financial suicide to some doctors. No drugs, fewer tests, less doctor visits. There aren't many diseases like that.

I'm also loathe to have any more testing done, so am enjoying better health with a gluten and corn free diet, while trying to avoid the critical opinions of 'friends'. One of my kids displayed all the hallmark signs of Celiacs, she reacts if she eats gluten, but I'm damned if I will let any doctor put her through the barrage of tests I had to endure, only to be told "no you don't have a gluten intolerance" despite all the evidence to the contrary!!

Stick to your guns. You are in good company here.

ravenwoodglass Mentor
ravenwoodglass
Posted

For a doctor to diagnose UC without even doing a colonoscopy is irresponsible and IMHO abusive. If you can't find another doctor who will test give the diet a good strict try and you might strongly suggest to your Mom that she give it a shot also. You never know she may have been misdiagnosed also.

missj Rookie
missj
Posted
  • Author

Thanks for everyones input. The thing with the doc, is that I did like her personality so maybe I will do as MsCurious has said and ask the question back to her "what would you do?" I never thought of that. I'll give her a second try (she is at the top rated facility in my city) and if it is the smae ol' stuff I'll go on another hunt.

8 Slices of bread a day, eh? At the time I had my first blood test done I was on a low carb diet that didn't include 1/4 of that! I did feel pretty good-the bloating was next to nothing and the constipation was much better. Then my best friend got married and I let my gaurd down around food since I was no longer trying to fit in dress. I ate the bad stuff more often...garlic bread is my biggest food vice.

Can any of you tell me what the blood tests for Celiacs actually are? I have a copy of my medical records and would like to go back through them to see what tests were done. I think I was tested twice but I don't know if it was the same both times or different or if there is even more than one type of blood test for it. Also, what are their norms? Is it just a positive/negative result or a numerical scale?

You guys have been so helpful! Thanks!

mushroom Proficient
mushroom
Posted

Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
×
×
  • 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.