Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please Help!


gf01

Recommended Posts

gf01 Newbie

Hi,

In the month of December, I was tested for IgA and Ttg I believe, and the doctor said that it was slightly abnormal(I am not sure what he meant by that) and in the month of January, I had an endoscopy done. The endoscopy was normal. So, my gastroentologist stated that the endoscopy is the ultimate right answer and that I could be having IBS and gave me a medication for it. I had it for 6 weeks and went for a follow up. I was not feeling any better. i still had terrible bloating, cramps, nausea etc. Then, the doctor said that since we tried with medication and your symptoms were not improving, let us try with a gluten free diet since your blood tests were slightly positive (I think that is what he said). It's been almost 6 weeks I have been on a gluten free diet and I definitely feel so much better except for ocassional bloating, cramps and nausea. I will be having a follow up doc appt this Thursday. I am not sure what to ask the doctor. I think I should probably ask him about my blood tests results (any numbers associated with it), and I am also thinking of asking him to check me for other things that I might be allergic to it. Whenever I have corn tortillas or like y'day I had caramel popcorn, and I am feeling miserable today, so could I be allergic to corn? I have been lactose intolerant off and on for about 11 years now. I am still having Lactaid. I had asked the doc if I have to stay away from dairy altogether and he said no. I guess I would have to ask the doc to check if I am intolerant to casein also. I have been anaemic for almost 12 years and have been having iron medication regularly and it has always happened that if this month, my iron count is good, next month is not.

I am not sure how do I go about this. What do I need to ask my doc when I meet him? I am thinking to test me for casein and any other intolerance I may be having and my celiac panel results. But, is there something else that I need to know or ask my doc? This forum has been my lifesaver. My doc had suggested that I see a nutritionist to chart out a gluten free diet and I had called about 8 of them in my insurance network and none of them what I was talking about. :( But, due to these forums, i knew what products to buy and what to stay away from. Thanks to all of you!!!

Thank you all for your help!


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



Celiac.com Sponsor (A8-M):



ladyx Newbie
Hi,

In the month of December, I was tested for IgA and Ttg I believe, and the doctor said that it was slightly abnormal(I am not sure what he meant by that) and in the month of January, I had an endoscopy done. The endoscopy was normal. So, my gastroentologist stated that the endoscopy is the ultimate right answer and that I could be having IBS and gave me a medication for it. I had it for 6 weeks and went for a follow up. I was not feeling any better. i still had terrible bloating, cramps, nausea etc. Then, the doctor said that since we tried with medication and your symptoms were not improving, let us try with a gluten free diet since your blood tests were slightly positive (I think that is what he said). It's been almost 6 weeks I have been on a gluten free diet and I definitely feel so much better except for ocassional bloating, cramps and nausea. I will be having a follow up doc appt this Thursday. I am not sure what to ask the doctor. I think I should probably ask him about my blood tests results (any numbers associated with it), and I am also thinking of asking him to check me for other things that I might be allergic to it. Whenever I have corn tortillas or like y'day I had caramel popcorn, and I am feeling miserable today, so could I be allergic to corn? I have been lactose intolerant off and on for about 11 years now. I am still having Lactaid. I had asked the doc if I have to stay away from dairy altogether and he said no. I guess I would have to ask the doc to check if I am intolerant to casein also. I have been anaemic for almost 12 years and have been having iron medication regularly and it has always happened that if this month, my iron count is good, next month is not.

I am not sure how do I go about this. What do I need to ask my doc when I meet him? I am thinking to test me for casein and any other intolerance I may be having and my celiac panel results. But, is there something else that I need to know or ask my doc? This forum has been my lifesaver. My doc had suggested that I see a nutritionist to chart out a gluten free diet and I had called about 8 of them in my insurance network and none of them what I was talking about. :( But, due to these forums, i knew what products to buy and what to stay away from. Thanks to all of you!!!

Thank you all for your help!

My blood test was positive but my biopsy was not that bad at all...be sure your GI sent your blood test to a good lab....My sons pediatric GI said that some labs don't do a full scale test...just the basics...not sure what that means as I don't know excatly what all they have to test for but sometimes you might get a better result from a different lab never hurts to have a second opinion. I also got a pamplet from my doctor about a lab that tests you for all your toxic foods. The pamlet stated that 95% of people have some form of toxic food to them. Just like Gluten is toxic to us. It seemed like a pretty reputable company...they stated that if you were one of the 5% who didn't have any toxic foods they would refund all your test fees. I wish I still had the name of the lab...I gave the one pamplet my doctor had left to one of my friends who was having serious GI problems. I will try to get somemore from him the next time I go in. Perhaps you have some other toxic foods to you besides gluten...maybe you can ask your doctor about that. Also if you want to feel even better faster I always used aleovera juice to heal my stomach, intestine, and bowel when they thought I had IBS....I hate taking medicine....If you want instant releif from your bloating and cramps get some activated charcoal form your local health food store and take 4-6 capsels ever 4-6 hours till you feel better. (this is only a quick fix cause charcoal sucks out everything from your system...so don't take it with meds cause your meds won't work the charcoal will take them right out of your system with everything else and don't take it for more than one day at a time...I only use charcoal when I am in a lot of pain and have gotten some gluten in my system and need something to get it out right away) For long term healing use pure aloe juice mix about 3-4 oz with some juice everymorning...it will heal your insides...If I were you I would try to go through about a gallon of it to make sure the healing process was complete...then you shouldn't have to use it again unless you start haveing trouble again. (You can drink the aloe juice straight but it tastes awful and is barley made better by juice...but the results are amazing and worth it) I am not a doctor so don't take this as medical advice but a a sincier person who is sharing what has worked for her...In my experience the IBS drugs I was given never did anything for me...but the aloe was amazing. Also I have found better results by going to a specialist...if you want to be tested for other allergies then you should go to an Alergist rather than a GI doctor....I have always gotten better results....The whole thing with milk is something I would just try for awhile...If it bothers you stay off it for awhile till your insides can heal then try it agian...I was severely intolaent to lactose but since I have been off gluten I can eat any dairy I want without trouble...maybe try the aloe and stay off milk products till you finish the gallon of aloe and then slowly introduce milk producst again if you want to and see if they still bother you. Just some ideas for you. I will try to google more information on toxic foods for you and get a pamlet from my doctor...so I know the name of the lab that does those tests and post it here.

ladyx Newbie

here is that website I promised you on toxic foods... this is the one from the pamplet I got from my doctor Open Original Shared Link Here is another one I found when I googled I don't know how reliable this one might be but here it is anyway Open Original Shared Link and here is one more to tell you how the test might work Open Original Shared Link Hope this helps:)

Ursa Major Collaborator

Anemia is a typical celiac symptom, for some people it was the only obvious symptom they had before being diagnosed. If your bloodwork was positive (even though the values weren't very high), I would take that as a probably diagnosis of celiac. He didn't test you for everything he should have. And unless they took biopsies from at least six different areas of your small intestine, they may have missed any damaged areas. Just because your biopsy was 'normal', doesn't necessarily mean you don't have Celiac disease.

Your doctor is wrong when he tells you that you shouldn't cut out dairy. It is a very common allergen, and you should try eliminating it, to see if it helps.

You don't need your doctor's permission to stop eating certain foods to figure out what makes you sick. It's your decision and none of his business. It sounds to me like he is not very knowledgable when it comes to celiac disease. So, you need to be your own doctor.

Corn is something a lot of people cannot tolerate. If you feel sick after eating it, you might want to stop having any for several weeks, and then try it again. If you have a reaction, you shouldn't have it any more (at least for the time being). And that goes for every other food you suspect is a problem as well.

TCA Contributor

My son had 2 negative biopsies and "inconclusive" bloodwork. He was soooo sick, though, so I put him on the diet anyway and the results have been AMAZING. You might want to do the rotation diet. You eat all you want of one type of food (dairy, rice, green beans, etc) in one serving, but don't eat it again for 3 days. Write down what you eat and when and any symptoms you have during the day. It takes a couple weeks to try it and go through a lot of foods. Soometime it helps identify what might be bothering you. My kids couldn't tolerate dairy for a long time, but after a few months on the diet, they have no problems with it. Their intestines just needed to heal.

Canadian Karen Community Regular

I would suspect that you do indeed have celiac disease. The damage to your intestines quite often is "patchy" and it is quite "hit or miss" as to whether the spots they decide to biopsy are the parts that have the damage or not.

I would try the gluten-free diet for a period of three months to see what results you get. I would also cut out dairy at the same time. If it is celiac disease, once your villi heal, you should be able to tolerate dairy again after awhile being gluten free.

The caramel popcorn that you had, could it perhaps have contained gluten? The caramel aspect of it?

Make sure you check all your meds, vitamins, toiletries, etc. Get your own toaster, etc. Try it for three months to see what happens..... Perhaps you have felt better on the diet but the gas and bloating occasionally could have been when gluten slipped through in something......

Good Luck!

Karen

gf01 Newbie

Alright! So, I had my GI appt yesterday and he asked me how I was doing on gluten-free diet and I said that I was doing much better but for the ocassional symptoms that came up. So, he asked me to go to an allergist to see if I was allergic to any other food groups. I asked him about my blood test results. So, this is what it showed

TTG-7.4 (which is higher than normal I believe)

Anti Gliadin IGA-<1.2 (which I think meant negative)

Anti Endomysal IgA-Not detected.

What do these mean? Only the TTG portion of it is positive. Again, my endoscopy was normal but I am responding well to the gluten-free diet. I asked the doc so what do I have? Do I have celiac? And, he said that he does not what to say as the endoscopy is golden test and that was negative. Does anyone in the forum know what this is or what I possibly might have?

Thanks a million!


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



Celiac.com Sponsor (A8-M):



mawc Newbie

here is that website I promised you on toxic foods... this is the one from the pamplet I got from my doctor Open Original Shared Link Here is another one I found when I googled I don't know how reliable this one might be but here it is anyway Open Original Shared Link and here is one more to tell you how the test might work Open Original Shared Link Hope this helps:)

[/quote

Did you do the blood work up with the immunolabs? If so was it useful information? I have just learned I have celiac sprue...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,685
    • Most Online (within 30 mins)
      7,748

    Janahawk
    Newest Member
    Janahawk
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
    • trents
      Welcome to the forum, @growlinhard1! If eliminating gluten from your diet makes significant improvement in your symptoms then there are two possibilities. Either you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is that celiac disease is an autoimmune disorder that creates inflammation and, over time, damages the lining of the small bowel which inhibits nutrient absorption whereas NCGS does not damage the lining of the small bowel. They share many of the same symptoms. At the end of the day, the antidote for both is to abstain from foods that contain wheat, barley or rye, the three gluten-containing grains. Some countries supply stipends and healthcare benefits for those with an official celiac diagnosis. If you live in the USA that does not apply. The main reasons for seeking an official celiac diagnosis are psychological and social. Many people have a hard time not falling off the gluten free bandwagon without an official diagnosis. They find it easy to rationalize it all away as being temporary or due to something else. When you have an official diagnosis, you tend to take gluten-free eating more seriously. Socially, family and friends are more likely to respect and attempt to comply with your need to eat gluten free if you have an official diagnosis of celiac disease. Your physician is more likely to take you seriously as well if you have an official diagnosis because there are typically other health problems that are spinoffs which develop from celiac disease in time. One autoimmune disease invites others. There are no tests for NCGS. Celiac disease must first be ruled out. We do have specific tests for celiac disease. By the way, some experts believe that NCGS can transition into celiac disease. If your endoscopy/biopsy is only a month away, I would encourage you to stick it out and go back on gluten to get an official diagnosis. You still have time to get a valid test result if you start back on gluten now, 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread.
    • BoiseNic
      I have the same problem. No matter what I eat, I seem to get a break out every 1 to 2 months. I do not do oats, citrus fruits, apples, onions and other foods also, as those cause reactions. The only time I have zero problems is when I fast. The only staple grain I have is quinoa, as that doesn't seem to cause me issues. I have linked mine to a microbiome imbalance. I am currently on month 3 of Skinesa. It's supposed to take 3 months before seeing results. I guess we'll see.
×
×
  • Create New...