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Symptoms Caused By Gluten Intolerance/celiac?


dfurlong

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dfurlong Newbie

I am wondering if gluten intolerance or celiac can cause severe headaches/fatigue/nauseousness/dizziness?

My 14 year old daughter has had these symptoms for the better part of a year. It started with fatigue, then came the headaches/dizziness and nauseousness which were brought on seemingly by physical activity. Activity makes it worse (at least at first it did). In the midst of this, she was diagnosed with Hashimoto's (which I also have), but that was caught fairly early before the antibodies became too elevated (and other labs were still in normal range).

We have been following a path that suggests that this is adrenal fatigue. I have low functioning adrenals (not Addisons, but they aren't normal either...very difficult to find doctors who consider such a thing...just like finding doctors who consider gluten intolerance versus Celiac).

However, I also have problems with gluten. Antibody test came back negative. I insisted they check when they did an endoscopy for GERD symptoms, but that was negative as well (I believe at the time I had gone off and on gluten, so I realize that could be the reason why things were negative). Nevertheless, I recognize I feel much better off gluten. It was causing neurologic symptoms (felt like I was tipsy most of the time, difficulty concentrating, etc).

This makes me wonder about my daughter as well. The only thing that I find not consistent with possible symptoms of Gluten intolerance is the fact that initially it appeared that physical activity brought on the symptoms. At this point and time, it is hit or miss with what makes it worse.

Sometimes I think I have celiacs, sometimes I think it is gluten intolerance. I had a former co-worker with celiac, and the slightest crumb of gluten made her sick. While I diligently avoid obvious gluten, I use the same toaster as my family, and there might be traces of gluten in condiments, etc. I avoid obvious gluten sources when eating out, but don't request they cook mine in a separate pan. Reading some of the posts makes me wonder if I tightened up my diet just that last little bit, would I notice additional improvement? Such as a clearing up of the junk that is often present in the back of my throat after I eat?

Dawn


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ravenwoodglass Mentor

Hi, Your DD symptoms sound much like my DD back before we knew. Her symptoms as with your DD were most pronounced after activity and for a while she was thought to have heart problems. She would start to shiver, get pale and at times her lips would turn blue. My DD was found to have ulcers, and thought to have an anxiety disorder and other problems which all resolved once I was diagnosed and she was tested (low positive endo celiac changes evident but not yet severe) and she became gluten-free. A big benefit for my teens has been that they now have no acne also.

It seems by your post that you have been told that gluten intolerance is less serious than celiac and that you do not need to be as diligent. This is not the case. Gluten intolerance can cause just as serious damage as celiac and can develop into full blown celiac symptoms if not addressed.

dfurlong Newbie

Hi Ravenwoodglass,

Thank you for your response. I have talked with my daughter already about trying a gluten free diet. She was resisitant the first time we spoke about it, but recently she has been asking me, "Does this contain wheat, does that contain wheat?" So I know she is thinking about it. However, I would like to have some labs done first before we try an elimination trial. That will come up in approximately 4 weeks, though I might be able to request sooner.

Physical activities (or more activity than normal) has been the normal kick off to the killer headaches, nausea and dizziness. Lately though the headaches have been a constant, with the other symptoms filtering in and out. The current doctor I am seeing indicated that he would have put her on steroids for a brief course when we started thyroid medication (because of the antibodies). He is also looking at family history (me) of Hashi's and adrenal fatigue. She is on low dose steroids right now, and we have seen some improvement, but still hit or miss. Do you think if it is the gluten, the steroids could temporarily make things better? (less inflammation, etc) I am wondering if that is why it has been such a yo-yo, because we are treating the wrong thing.

I have been unclear as to whether Gluten Intolerance is as bad as Celiacs. It is hard to find the information, because most medical info focuses on typical Celiac symptoms, which neither I nor my daughter have. Since I feel so much better without gluten, I don't eat it, but as I mentioned in my original post, there are likely small sources of gluten here and there in my diet. I have wondered if it could get worse by my not addressing things like toaster use. I have been thinking about that and your post helps.

Dawn

Hi, Your DD symptoms sound much like my DD back before we knew. Her symptoms as with your DD were most pronounced after activity and for a while she was thought to have heart problems. She would start to shiver, get pale and at times her lips would turn blue. My DD was found to have ulcers, and thought to have an anxiety disorder and other problems which all resolved once I was diagnosed and she was tested (low positive endo celiac changes evident but not yet severe) and she became gluten-free. A big benefit for my teens has been that they now have no acne also.

It seems by your post that you have been told that gluten intolerance is less serious than celiac and that you do not need to be as diligent. This is not the case. Gluten intolerance can cause just as serious damage as celiac and can develop into full blown celiac symptoms if not addressed.

jmd3 Contributor
I am wondering if gluten intolerance or celiac can cause severe headaches/fatigue/nauseousness/dizziness?

My 14 year old daughter has had these symptoms for the better part of a year. It started with fatigue, then came the headaches/dizziness and nauseousness which were brought on seemingly by physical activity. Activity makes it worse (at least at first it did). In the midst of this, she was diagnosed with Hashimoto's (which I also have), but that was caught fairly early before the antibodies became too elevated (and other labs were still in normal range).

Dawn

I have celiac disease, and my daughter has hashi's, and an obvious goiter, but the doctors have not given her any med's yet. We have stopped gluten for her, and she is doing soooo much better. Even the physical activity after effects are better. She has severe headaches, where she would see colors, otherwise known as migraines. Her headaches are very now rare. After exercise my DD used to have terrible side pain, cough for a long time, and have asthma problems. I have also introduced kelp in her diet, and her blood tests have stayed the same, no better, no worse. For the last 3 years she would get up in the middle of the night every night to go to the bathroom... her age should not. Now, it is very rare for her to do that.

It was my DD's decision to stop gluten, and then she had some wheat soft pretzels while at a friends house, and she called in the middle of the night to come get her, she had terrible itching, breathing issues, and more, ....now she is all for the not eating gluten, she hasn't had an issue since. She is eating so much better - fruits, veggies, hormone free meats, eggs, yogurt, gluten free pancakes with fruit, etc.... there are so many options.

I can't tell you what it has done for her physically - it is wonderful. We pack her lunch everyday - organic juice, veggies, fruit, yogurt, and then chicken legs, or hamburg patti, or thin pork loin slices.....she is loving her lunches, and it shows on her skin, and her daily regimen.

Her pediatrician is not very happy with her stopping the gluten, says it is unfair to her-

....But she hasn't had to take Zyrtec everyday anymore!!!!!!!!

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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