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Help I'm Not Sure What To Do

Jennifer C

By Jennifer C
in Coping with Celiac Disease

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Jennifer C Newbie
Jennifer C
Posted

I have a complicated health history that begins with Hashimoto's Thyroiditis (ended up in Myexedema Coma), then I was relatively healthy until my 30's. I was diagnosed with Systemic Scleroderma (very serious was initially given 6 months to live no treatments known, but I did find a treatment that has worked), Reynaud's, atypical chest pain, Sjogrens, asthma, and IBS. I thought after getting a handle on all of this I would be fine, but last year at 37 years old I was diagnosed with Follicular Lymphoma (cancer of the lymph nodes) and my world was rocked yet again. To make a long story shorter, I was on a gluten free diet 2 years ago, but I never felt better on the diet (stayed on it for 6 months) and this past month I was diagnosed with an allergy to gluten. I have been on the gluten free diet for 2 weeks now, but instead of feeling better I am feeling much worse. I am sick to my stomach and nauseous and I am vomiting. I am also unable to eat meat, because it makes me feel very sick and so I try to eat fruits and vegetables but I am lucky to keep any of it down. My husband says I look emaciated, and I am not sure what to do. I am Italian and pasta was my food of choice before all of this occurred. Has anyone else had this kind of reaction to going gluten free? I would appreciate any information anyone could give me.

Thank you for listening and I look forward to hearing from you,

Jennifer

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mushroom Proficient
mushroom
Posted

Hello Jennifer, and welcome to the board. I am sorry to hear you are feeling so lousy after going gluten free. But it is a not uncommon experience to feel worse before you feel better. Remember, firstly, that you have a very damaged small intestine that is having a hard time digesting anything. Secondly, gluten has an opioid effect on the body, so you are going through withdrawal symptoms.

For such a delicate digestive system you should make life as easy for it as possible. Soups and broths and well cooked, easy to digest fruits and vegetables (I would avoid anything raw, including salads at this point) will probably work best. Baked yams, some rice perhaps, applesauce, chicken soup are all good choices. Avoid all processed foods, especially the starchy ones. For fats, use olive oil, maybe some avocado or nut butters (eat it off the spoon, not in a sandwich). Keep it pure and simple and easy to digest and wait for things to settle down a bit. If you think you can handle them, a probiotic to help promote the growth of good flora in your gut would be good. Some of us also find digestive enzymes help too, because gluten can suppress the ability of the body to produce digestive enzymes. Also avoid dairy products because you will have problems digesting those for a while.

You can expect the withdrawal symtoms to last three weeks or so, so you should be over the worst of that hump soon. Hang in there and treat your stomach kindly. :) I hope you are feeling better soon..[[[[hugs]]]]

eatmeat4good Enthusiast
eatmeat4good
Posted

Mushroom gives all good advice and the only thing I might suggest is anti-nausea medicine from the Dr.

I had to take an anti-nausea medicine for a few weeks in order to keep from losing my food. It was Promethazine and it worked very well even at a low dose. You might check with the Dr. to see if you can have it or if it would be helpful. I ate pureed soups with chicken and veggies...slowly. No raw veggies at all. It was a few months before I could eat a salad.

mamaw Community Regular
mamaw
Posted

Hello

so sorry you have been & now are going through so much...Mushroom gave you some good tips...Stay with whole foods & I would stay away from a lot of the processed foods gluten-free or not...Do you have a juicer? Whole foods made into juices have been a life saver for many....

Also would you mind sharing what you did for your scleroderma? I know a person who is struggling with this disease....thanks

I hope you get to feeling better very soon... blessings mamaw

Jennifer C Newbie
Jennifer C
Posted
  • Author

Hello

so sorry you have been & now are going through so much...Mushroom gave you some good tips...Stay with whole foods & I would stay away from a lot of the processed foods gluten-free or not...Do you have a juicer? Whole foods made into juices have been a life saver for many....

Also would you mind sharing what you did for your scleroderma? I know a person who is struggling with this disease....thanks

I hope you get to feeling better very soon... blessings mamaw

Mamaw,

I wouldn't mind sharing the treatment I am using for Scleroderma at all. I am using something called "The Antibiotic Protocol" otherwise known as AP therapy. I went to see a doctor in Southern california who has had great success with this treatment for those who have the more severe form of Scleroderma. I would suggest getting the book "Scleroderma A Proven Therapy" by Henry Scammel, that is where I first heard of the treatment. Also my husband has a list of what he calls "finer points" which are things that we found out the hard way would help with treatment, some of them are helpful tips on what to look for. If your friend is interested I could send her a copy. There is also a website for people with scleroderma who are using this treatment called www.roadback.org this site has a lot of helpful information on what to expect and it is also a support site for people who have been diagnosed with this disease who are searching for answers. I have found it to be very helpful to me.

I hope this helps,

Jen

Jennifer C Newbie
Jennifer C
Posted
  • Author

Thank you all for your help. I really appreciate it. It comforts me to know that I am not alone in what I am experiencing. I have had such a difficult journey concerning my health and I have often felt alone in what I am going through. I wouldn't wish any discomfort on anyone, but just knowing that I am not alone in this makes me feel like there is hope that I will get better.

I really appreciate all of you and thank you for taking the time to talk with me.

Sincerely,

Jennifer C

mamaw Community Regular
mamaw
Posted

Thank you so much for the info. My friend does not have a computer so I try to gather info for her.. If you could PM the info your husband has I will pass it along. I just print information out for her.....she to date has not been having great success with her current doctor...

Thanks

prayers are with you......

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IrishHeart Veteran
IrishHeart
Posted

Jennifer,

I posted the info you requested about safe foods you may want to try on the other thread that Meggielynn started.

I hope it helps.

Best wishes,

IH

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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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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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 😅
    • knitty kitty
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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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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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