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Am I Celiac Now?
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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.

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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.

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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. :)

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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.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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