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Ever Changing Symptoms Of Celiac

Carla H

By Carla H
in Coping with Celiac Disease

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Carla H Newbie
Carla H
Posted

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??

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eatmeat4good Enthusiast
eatmeat4good
Posted

My son's asthma completely went away when he went gluten free. He has had severe asthma his whole life. Go figure. All that prednisone and antibiotics and inhalers were for nothing.

Yes, you can become increasingly sensitive to gluten. This sounds like what is happening to you. If your rash is Celiac DH, you will have to limit iodine in addition to watching for trace gluten. This rash is extremely sensitive to gluten and iodine. Your other symptoms of generally feeling really unwell are also consistent with what we call a "glutening." Your body will present you with a myriad of symptoms and often they are not recognized as being a result of gluten until you have started being gluten free and then you begin to make the connections between strange symptoms and episodes of glutening.

Be sure you read all labels twice and get rid of any gluten in your kitchen if you can. Pots, pans, toasters, kissing someone who eats gluten, touching gluten food and then touching your own food. All of these can "get" you. Be sure not to use wheat flour or allow it to be used in your home. You can inhale the suspended particles of flour and become very ill when they are inhaled and make their way to your stomach. I learned all this the hard way. I had read about cross-contamination but didn't believe I would be that sensitive. Indeed I am. So I just wanted to make you aware of how awful even traces of gluten can make you feel. Hope you feel better soon.

Carla H Newbie
Carla H
Posted
  • Author

Thanks so much for the input, was to the doctor today for newest rash (not the DH but she said Celiac can"present" in different forms. They now want me to go to endocronlogist they suspect I may have thyroid issue on top of everything else plus see a nutritionist as I've dropped of bunch of weight not eating gluten. Who knew eating gluten would put weight on? but since I'm gluten-free now I've dropped weight too quickly.

I figured the toaster was probably an issue but the pans?? can't I just clean really and not cook gluten in them going forward? I still have gluten-free eaters in the home but mostly we cook gluten-free anymore. too much of a bother to cook two separate meals.

AVR1962 Collaborator
AVR1962
Posted

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??

Yes, after I went gluten-free, my muscles and bones ached and still do from time to time now. I had the stiffest neck for a long time. Since diagnosed I have had problems with the planter's faciitis in my left foot, podiatrist said that with celiac he was not surprised as it effects the muscles, joints and connective tissues. I have been taking extra magnesium, potassium, and manganese to help my muscles. The supplements have eased my problem but they still are not gone.

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      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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