Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Am I Celiac Now?
0

4 posts in this topic

Hello everyone!

I registered here to learn more about Gluten free healthier life. I am married, a mother to a 17 months old toddler and live In Germany. My whole family (husband, son and me), seem to be experiencing symptoms of a gluten intolerance or Celiac disease.

I was hoping someone could help me figure this out, so we know what we are dealing with.

Summer 2011, I did not know anything about Gluten, nor did I experience obvious problems. But I was dealing with a lot of health issues, mostly autoimmune and hormone related problems (Hashimoto's, Pituitary Tumor and raised Prolactin), but also HPV and pre cervical cancer (CIN3 high grade lesions), and the cells stuck around even after surgery on my cervix pre pregnancy.

Anyhow, because I was fed up with health issues, I agreed to try the Paleo Diet, which my husband had researched and I read a lot of good things about the health benefits.

I started by cutting out Gluten (which made me feel better but not perfect), but later all grains (so corn and rice too), legumes, dairy, sugars. I was really not eating bad before, on the contrary, I was eating all organic, always home made and abiding to general health rules.

Only a few weeks into the Paleo Diet I started improving dramatically. I was not even aware of some problems until they left me...Fatigue, Brain Fog, Joint pain, Hypoglycemia, underweight, constipation, bloating, cramps, pimples. And my official health issues, also went away. I don't have Hashimoto's anymore, my thyroid works normal, I have a few antibodies left but nothing that requires medication anymore, my pituitary tumor shrank down to nothingness, my prolactin is normal, my HPV and cancer are gone without a trace.

I am still so shocked about all these sudden improvements, that I hardly ever talk about it. Especially not around my family. I told them I must have some sort of Gluten intolerance too, and they think I am crazy. They try to feed me foods I can't eat and argue about my son's diet.

The longer I have been avoiding foods, the more sensitive I seem to be towards them. When I cheated on my diet a year ago, for a special occasion for example, I would just break out a little and maybe have some nausea and brain fog.

Now, my body reacts violently, and I will be sick for days. Especially the first day I have a hard time functioning. Even when I accidentally ingest small amounts. Like flour in a seasoning.

Almost right away I get nausea, headaches, inflammation like pains in different body parts (mostly my right arm), dizziness, stomach pains, bowel problems, severe brain fog to the point where I feel "drugged" and the next day I have breakouts and lately my hair has been falling out from it too. Like I would suddenly shed a lot of hair and if I stay clean it will stop (I have lost a lot of hair this way).

What is weird though, is that I also react to rice, corn, soy, dairy. Although much less.

My son will pretty much throws up everything that I can't eat. My family is very interested in "training him to tolerate certain foods", and it has led to him being sick after. It is a really big issue for me, and I have fought more than one argument because of it.

My husband started on a Paleo Diet too, but did not stick with it. Prior to changing his diet he had already experienced problems after eating certain foods. Especially allergy like symptoms (runny or stuffy nose and itchy throat, bowel problems). He is still eating partly Paleo but he cheats on his diet often. He will feel sick as well, but not nearly as bad as me.

Can someone explain to me what is going on? Was I/ where we Gluten intolerant or Celiac and just never noticed? According to the Paleo Diet grains and Gluten are always bad, for everyone, yet not everyone seems to have reactions as severe as me or my son. So I am thinking we might have always been more sensitive to it.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hello from the Twin Cities in Minnesota!

Your journey sounds similar to many of the rest of us. To me, it sounds like celiac, and yes, I have noticed increased sensitivity to foods since going gluten from 1.5 years ago. It's like removing gluten helps your system settle down, then each time you have it (or grains), you body says "No!" more emphatically each time. In any event, glad you and your son are feeling so much better. I am considering going Paleo and you've given me more reason to do so.

0

Share this post


Link to post
Share on other sites

It sounds like it could be ceiliac or non-celiac gluten intolerance (NCGI), you can't know which unless testing is done but to do the blood testing you need to have been eating gluten for weeks; it's possible a endoscopic biopsy might be an option for you still if you can get in immediately for the procedure otherwise you would need to consume gluten for testing.

If it is celiac, you all should go 100% gluten free otherwise you are damaging yourselves and putting yourselves at risk for future health problems. Small amounts like a crumb, or 1 part per million in a sauce, can cause reactions... you'll need to get everyone on board so your son isn't getting gluten.

If it's NCGI, when you eat gluten you'll have reactions but not the intestinal damage. My sons all tested negative for celiac but over Xmas they had cheezies that I didn't check and my two children who have reacted positively to the gluten-free diet were quite sick within 12 hours for half a day. They had quite a reaction and they are (at the least ) NCGI's... They used to have minor stomach issues when they ate gluten, they didn't vomit in the past.

I haven't noticed worst symptoms in myself when I eat gluten, but it is definitely more noticeable now because I am no longer used to feeling sick.

I wish you all the best with the gluten-free diet. :)

0

Share this post


Link to post
Share on other sites

Hello everyone!

I registered here to learn more about Gluten free healthier life. I am married, a mother to a 17 months old toddler and live In Germany. My whole family (husband, son and me), seem to be experiencing symptoms of a gluten intolerance or Celiac disease.

I was hoping someone could help me figure this out, so we know what we are dealing with.

Summer 2011, I did not know anything about Gluten, nor did I experience obvious problems. But I was dealing with a lot of health issues, mostly autoimmune and hormone related problems (Hashimoto's, Pituitary Tumor and raised Prolactin), but also HPV and pre cervical cancer (CIN3 high grade lesions), and the cells stuck around even after surgery on my cervix pre pregnancy.

That is quite a big list right there.

Anyhow, because I was fed up with health issues, I agreed to try the Paleo Diet, which my husband had researched and I read a lot of good things about the health benefits.

I started by cutting out Gluten (which made me feel better but not perfect), but later all grains (so corn and rice too), legumes, dairy, sugars. I was really not eating bad before, on the contrary, I was eating all organic, always home made and abiding to general health rules.

A lot of other grains are processed in facilities that also process wheat, so they get cross contaminated. That may be why you experienced discomfort while eating the other grains.

Only a few weeks into the Paleo Diet I started improving dramatically. I was not even aware of some problems until they left me...Fatigue, Brain Fog, Joint pain, Hypoglycemia, underweight, constipation, bloating, cramps, pimples. And my official health issues, also went away. I don't have Hashimoto's anymore, my thyroid works normal, I have a few antibodies left but nothing that requires medication anymore, my pituitary tumor shrank down to nothingness, my prolactin is normal, my HPV and cancer are gone without a trace.

There is currently not a cure for autoimmune diseases; you still have the autoimmune disease but you are in remission when you avoid grains.

I am still so shocked about all these sudden improvements, that I hardly ever talk about it. Especially not around my family. I told them I must have some sort of Gluten intolerance too, and they think I am crazy. They try to feed me foods I can't eat and argue about my son's diet.

You and your family need to start reading publications by Dr. Alessio Fasano, who discovered the protein zonulin and who is at the forefront of celiac and autoimmune disease research.

I recommend that you start with this: "RHR: Pioneering Researcher Alessio Fasano M.D. on Gluten, Autoimmunity & Leaky Gut"

Next, read these:

"Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity, and Cancer"

"Spectrum of gluten-related disorders: consensus on new nomenclature and classification."

The longer I have been avoiding foods, the more sensitive I seem to be towards them. When I cheated on my diet a year ago, for a special occasion for example, I would just break out a little and maybe have some nausea and brain fog.

Now, my body reacts violently, and I will be sick for days. Especially the first day I have a hard time functioning. Even when I accidentally ingest small amounts. Like flour in a seasoning.

Almost right away I get nausea, headaches, inflammation like pains in different body parts (mostly my right arm), dizziness, stomach pains, bowel problems, severe brain fog to the point where I feel "drugged" and the next day I have breakouts and lately my hair has been falling out from it too. Like I would suddenly shed a lot of hair and if I stay clean it will stop (I have lost a lot of hair this way).

What is weird though, is that I also react to rice, corn, soy, dairy. Although much less.

Those sound mostly like thyroid problems. So with certainty we can say that your thyroid is reacting badly when you are glutenned. I'm not completely sure about the rice, corn, soy or dairy, but after reading the literature I linked to above, I would guess that those things are triggering zonulin release just like the gluten is. Could be wrong; don't really know.

My son will pretty much throws up everything that I can't eat. My family is very interested in "training him to tolerate certain foods",

No, no, no, no, and again, no. Training him to tolerate foods that his body is obviously not accepting is dangerous and can lead to the development of autoimmune disorders. What you need to do is firmly, swiftly, and completely remove all those foods from his diet that are giving him trouble. Trust your body's reaction. Log everything that causes trouble and avoid them with a fierceness.

and it has led to him being sick after. It is a really big issue for me, and I have fought more than one argument because of it.

I do not understand how your family can be so unsupportive. Obviously they need to be educated about food sensitivities and Celiac disease. Have them read the stuff by Dr. Alessio Fasano. Celiac and autoimmune disorders are real, not made up, not in our imaginations, but real. Medical science is currently behind in this area and is trying to catch up. Dr. Alessio Fasano is in the front lines of this type of research.

My husband started on a Paleo Diet too, but did not stick with it. Prior to changing his diet he had already experienced problems after eating certain foods. Especially allergy like symptoms (runny or stuffy nose and itchy throat, bowel problems). He is still eating partly Paleo but he cheats on his diet often. He will feel sick as well, but not nearly as bad as me.

It's difficult, especially for men, to avoid foods that give them symptoms, unless they have a difinitive test done that proves to them that they have a disease or a sensitivity. Perhaps once he reads the publications and literature by Dr. Alessio Fasano, he will see that exposing his body to foods that make him sick can lead to autoimmune disorders for which he will need to take medications, and he will stop cheating on his diet.

Can someone explain to me what is going on? Was I/ where we Gluten intolerant or Celiac and just never noticed? According to the Paleo Diet grains and Gluten are always bad, for everyone, yet not everyone seems to have reactions as severe as me or my son. So I am thinking we might have always been more sensitive to it.

According to what I have read from Dr. Alessio Fasano, when people (anyone and everyone) eats gluten, their epithelial cells release zonulin, which opens up the tight junctions and allows paricles to move through the opening and into the lamina propria. Zonulin is triggered by gluten and bacteria and viruses; essentially, the body treats gluten as though it were a virus or a bacteria. Once gluten moves through the opening, it undergoes various attempts at breakdown by the body, and in genetically predisposed individuals, this can lead to an autoimmune reaction known as Celiac Disease.

The difference between those who have autoimmune disorders and those who do not, is that the body will overproduce zonulin and the tight junctions will be open a lot longer in autoimmune folks. This allows macromolecules to pass through the opening and get to places they do not belong, causing the body to react to them, which can lead to autoimmunity.

As far as I know, no one has yet discovered why zonulin is upregulated in autoimmune people. But this is a cutting edge field of science and new discoveries and medications are on the horizon.

The simplest, best way to heal your body is to avoid gluten because it is obviously causing you problems. Perhaps some probiotics are also in order because they help with leaky gut and immunity. Hope this helps.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,570
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined