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How Long Until You Start Feeling Better?

Annabee93

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Annabee93 Newbie
Annabee93
Posted

So, I started my gluten-free dairy free diet on January 1st of this year. I've been told I don't have celica, but I'm not sure I believe my doctor.(my IGA came back normal, the IGG came back high.)

Anyway....

I feel a little better, since starting. I'm not as tired and the dark circles under my eyes have gotten better. But, I'm hungry alllll the time!! I eat and it's like I'm not eaten. I have to constantly have food in my stomach or I feel so sick I can't move. It's driving me crazy. Every since going gluten-free I've had acid reflux. I've had reflux in the past, but it has not bothered me for about 3 years. Now all of the sudden it's awful! I've also been more gassy and still have stomach pains. It's frustrating! How long until I should start feeling better! Since I've been told I don't have celiac, should I go back to the doctor and make sure I don't have some other problem? Please Help!!

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shopgirl Contributor
shopgirl
Posted

Have you tried dropping dairy? That can be a killer especially in the beginning. I had to drop it after it started causing some abdominal pain and bloating

Noche22 Rookie
Noche22
Posted

Do you have any problems with your gall bladder? I ask because, I only found out a week ago I have celiac disease. In May is when everything began hardcore crashing down on me. I got VERY sick with massive stomach pain, severe acid reflux...to the point I would vomit....bloating....hunger, but couldn't eat, etc. It took several trips to the ER and one ER doctor discharging me with 'acid reflux' and me demanding my regular doctor to come to see me and being admitted. I refused to leave because I knew I didn't have just acid reflux. I was very sick. All my tests were coming up normal, everything. Even a scan. They ended up giving me a hydescan (sp?) where they inject the dye to my gall bladder. Sure enough....it wasn't functioning at all!!! I was booked for immediate surgery. Weeks later I was still sick....they found I had hernia. Another surgery. Weeks later....STILL SICK....I continued to put all my clues together over the past years and here I am. My friend suspected I had celiac, I researched.....went to doctor, had all the classic symptoms including the not so common ones and my tests came back positive.

My issues ironically starting becoming more obvious when my gall bladder failed. I am not sure of the connection, but maybe you are having the same type of isssues???

T.H. Community Regular
T.H.
Posted

The constant hunger is something that some of us get, gluten free. I've heard lots of theories for it. One, you're healing and your body needs a lot of nutrients to do this. Another theory I've heard is that you're finally healing, and starting to digest, and your body is desperately trying to get the nutrients it hasn't had for a long time. And your hunger can be related to nutrient needs as much as caloric ones.

I had nearly 2 months of that - just felt like I was starving, constantly, no matter how much I ate. It eventually passed, but just...much sympathy for your hunger. It's miserable.

Don't know about the other, though - hopefully some of these other ideas can help you with something.

So, I started my gluten-free dairy free diet on January 1st of this year. I've been told I don't have celica, but I'm not sure I believe my doctor.(my IGA came back normal, the IGG came back high.)

Anyway....

I feel a little better, since starting. I'm not as tired and the dark circles under my eyes have gotten better. But, I'm hungry alllll the time!! I eat and it's like I'm not eaten. I have to constantly have food in my stomach or I feel so sick I can't move. It's driving me crazy. Every since going gluten-free I've had acid reflux. I've had reflux in the past, but it has not bothered me for about 3 years. Now all of the sudden it's awful! I've also been more gassy and still have stomach pains. It's frustrating! How long until I should start feeling better! Since I've been told I don't have celiac, should I go back to the doctor and make sure I don't have some other problem? Please Help!!

SGWhiskers Collaborator
SGWhiskers
Posted

I had the insane, ravenous hunger for 3 months. It dwindled to 3 meals and 4 snacks/day by 6 months. I still can't skip lunch like I used to before going gluten-free. Look at what kinds of foods you are eating. Are they gas causers (soy, beans, cruciferous veggies, apples, cucumbers, soda, dairy, I'm sure there are more)?

I had little heartburn before going gluten-free, but had a long stretch of it which I eventually attributed to too many tomatoes. I also had stomach pain which was eventually releived when I stopped the NSAIDS/Asprin and switched to protien shakes instead of multivitamin pills. (I've added back chewable multivitamins successfully).

Regarding your diagnosis:

I would stay strictly gluten free for at least 3 months. You seem to be responding to the diet and would do well to stay gluten free for life.

If doctor does not feel you have celiac, I would ask for an explanation of what he thinks could be causing your high IGG numbers. If it's not celiac, it's something else that needs a diagnosis and treatment. (But you've already figured out it's probably celiac).

Keep it up and good for you for taking charge.

Annabee93 Newbie
Annabee93
Posted
  • Author

Have you tried dropping dairy? That can be a killer especially in the beginning. I had to drop it after it started causing some abdominal pain and bloating

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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